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Long venting..bills, doctors, depression


tjrasMOM

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It's been a long, exhausting week. Mom helped so much with the haunted house at my daughters' school. And the same day got great news and bad news. Her tumor has shrunk so much that it's detached from her lung wall. But then with the CT scan they found a blood clot in her lung. Her oncologist said she needed to start Coumadin. But he also wanted her to admit herself to the ER to be watched for a few days. God bless Mom, she said she had to see the haunted house and would check herself in first thing Saturday morning. So, Sat a.m. I took her to the ER. We also knew that this would eliminate some of the financial burden of the new meds. Getting in the hospital makes it covered by insurance. If she were to take it home, it's not covered. And for $500 / per 7 days-worth-of-meds it causes a financial burden!! But after she was almost admitted and moved upstairs, her Pulmonary specialist comes in and releases her...saying it's outpatient stuff...that she didn't need to stay in the hosp.

He also gave her some very frank & straight forward information that kind of popped her bubble of being happy about the shrinking tumor. He told her that at stage IV we're "hoping" for 3-5 years. That without treatment it can take ones life within 12 months or so. He said that with lung cancer it just keeps coming back...that there is no cure....blah, blah, blah. I never wanted someone to lay it out like that for my mom. I'm the one obsessed with researching things. She hasn't tried to research anything and she doesn't want people to give her information she's not asking for. She is fighting it with inner strength and if they take her hope away, then she'll stop fighting emotionally.

So, yesterday I went to see her after she sounded really stressed and depressed over the phone. Everything is getting to her.......The medical bills, no income to pay everything, ultility companies who won't waive early cancellation charges...even for a cancer patient, her empty house that is just sitting there not making money from a renter because she hasn't had enough energy to sort through her things and get it ready to rent out, worrying about ME and what I will want out of her stuff, planning her path for however long she has...planning for when the day comes that she is no longer here with us....

And to top all that off, her pulmonary dr. almost made it sound like "what's the point....you'll be gone soon enough...." And then...her oncologist gave her the news that he's going to stop chemo. Even though her tumor has DRASTICALLY shrunk, her blood counts have been crashing too much. She's had so many platelet transfusions in the past few weeks. So, her onc. told her no more chemo. She felt like he was saying, "This is it. We've done 6 cycles and that's all we can do."

But of course I wish I was there at that appointment because I'm thinking he will start it up again if / when the cancer shows up again. I wish I heard what he said word for word.

I just want to know what we can do or what people know about alternative treatment when one is not on chemo????

P.S. Regarding her ultility bill problems: DirecTV said they'd waive the early cancellation fee of $187 when we first called to cancel June 12, 2007. This was 2 days before her 1st chemo appointment. But of course they lost this "information" in their system & don't recall promising this. Mom was sent to collections and has been harrassed and threatened regarding the balance. She wrote letters, sent a copy of her PET scan and explained that she had to move in with her 94-yr-old father in order to pay medical bills. She could not move the service with her as it wasn't her house. They REFUSED to waive her fees. They sent letters saying it was still her responsibility. Yesterday she was in tears over it. Could not fight with their collection department anymore. So, today I called. Again, the man on the phone said "his hands were tied" and that the only thing they could do was have me pay her balance and then they would credit MY own account for the same amount. This would close her account on good terms and wipe out what she owed. It was the only thing they could do since her account was in collection. (I don't always believe that "their hands are tied" but whatever. Well, being as emotional as I was during the phone call, I couldn't see how this was helping us. I felt they were making it more complicated and still trying to get money from us....I said that I didn't understand why they couldn't just cancel her account knowing that she was stage IV cancer. I said, "What does it take? Does she have to die before you waive these fees??" Would you believe that he said, "Yes ma'am, unfortunately that is...um, what will waive the fees. I'm sorry to say but I have seen death certificates be sent in in order to waive the fees." I called him and all major corporations like this one A**HOLES and hung up.

Once I calmed down, I realized it was an ok offer. My husband explained how it was fine and said that I should accept it and just be done with it. I called back and got some other call center, God knows where. I asked for a supervisor again and went through the whole thing again. Still crying, but no anger left. I was ready to settle. But then, this wonderful supervisor, named Melissa listened to my whole story. She said very calmly, "I'm just going to cancel the account and waive all the fees." I was shocked. I whispered, "I'm not trying to shoot myself in the foot here, but the last person I spoke to said it couldn't be done..." She said, "Well, HE couldn't do it, but I can."

And there it was, done. Her account closed and no cancellation fees to pay. After MONTHS of fighting with collections. Why do they make it so difficult? Why do they stress their customers out so much and refuse to be compassionate even in the worst circumstances??

OK -- this was a very long venting session. Thank you if you've read it this far.

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Who do these people think they are?! How DARE they try to take away your mother's hope? Oh, this makes me so angry!

And these awful companies! I've had these experiences as well. I'm glad you finally found someone that could help you, but you and your mom should not have had to go through all of that over DirecTV...how trivial!

I am so sorry that you and your mom are going through all this. Wishing you peace.

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If the Doctor will not fight Find one that will. What one dr says and another doctor does are 2 different things. My late wifes Oncologist never gave up no matter what. He was as shocked as I was when shedid pass suddenly. Remember, YOu ahve one set of parents and Oncologists and Doctors have lots of patients. I say get a second opinion. you may be surprised..

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Can' write long,

Your vent is fine, it shows people

not to accept ''NO'' from some

a**hole without a heart in a

big company, there is always

somebody higher that directs things.

Same for the doctor, somebody higher

than him (to me 'God') is directing

the life time of your mother.

Keep up the good work.

Jackie

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I just want to say you and your Mom are in my thoughts and prayers.

I agree with Randy, get another opinion. I am so so sorry you and Mom had to go through ALL of this crap. Makes me wonder somedays whether these big companies as well as those in the medical profession have any heart at all.

Hugs

Christine

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The doctor at the hospital was so wrong for telling your Mom all of that false information. How does HE know how many years, months, minutes, etc., a person has left? I can understand you wanting to punch him right in the nose. What a jerk.

I also understand fully, how upsetting it is trying to deal with electric companies, phone companies, etc.

It's enough to make you want to pull your hair out.

The bottom line is, they don't care....not at all, in the least.

Thank goodness you finally got someone on the phone that could fix the problem. Keep her name handy, (for the next 20 years or so), in case they try to change their minds again. :evil:

I'm sorry you guys are going thru such hard times.

It's exhausting, for everyone.

Take care,

Nova

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I agree totally with Randy. PLEASE seek out another opinion. I can't help but think...You said there was definite shrinkage. So why is this not fantastic news to those docs?? I'm sorry, I just don't get it. Please find a doc who is willing to fight alongside your Mom and you. Please don't give up hope...Keep the fight going!! Sending prayers your way. Ellie

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I'm so sorry for all you and your mom are going through. It's so frustrating when you have such hope and have already shown great improvement on treatment and then they pull the rug out from under you. I say try and ignore his insensative words and prove him wrong. Keep fighting this disease. As we can see on this wonderful site, the ARE success stories! Shelley

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Whew! What a lot to deal with!

First off, find out from your mom's onc whether he is placing her on a chemo "vacation." Sounds like her blood cell counts are so low that he wants to give her body time to recover. These little vacations are often good, although I would much prefer to be on a beach, sipping a nice tropical drink...

Second, see if you can lay out a plan for your mom as to who can help with what. Can you delegate some phone calls to a friend or relative? Just having someone else take care of it will help her so much! Contact a social worker at the hospital your mom has been using. They should be able to help you navigate the support network and get your mom some help with her bills, etc. Perhaps she qualifies for disability Medicare or even Medicaid?

Third, gather up a team of family and friends to clean out the rental unit.

As to the idiot doctor, if anything like that ever happens again, stop the person from speaking further and ask, "Excuse me, but did anyone ASK for this information? She chooses to not focus on that. Please respect her wishes." And I would file a letter of complaint to the Chief of Staff at the hospital. This doctor knows better than to behave like that! Unfortunately, we are indeed surrounded by the compassionate-challenged morons!

Keep your chin up! You are doing great!

~Karen

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I think your mom should see another pulmonolgist too if she can't ignore the pronouncements he made.

I have been told that the benefit of chemo drastically shrinks after the 4th round. They go to 6 rounds just to get the last little bit of benefit they can out of it. After that the bad stuff outweighs the good stuff.

Maybe your mom could go on a regimen of supplements and antioxidants during her chemo break. They will probably watch to see if there is any progression as time goes by and start a new line of chemo if needed.

Also, since the disease is under control now, your mom may be a candidate for cyberknife surgery where she could have the residual disease zapped if there is not too much of it. It would not be a cure, but perhaps your mom could be NED for a while. I think it buys more time.

http://www.cyberknifesupport.org/forum/

Don M

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I've decided to make an appointment with her oncologist so that I can ask him some questions. I also want to tell him that his change in attitude from last week to this week has affected my mom immensely. Mom honestly feels that her (negative attitude) Pulmonary Specialist must have said something to her oncologist to change his attitude. She told my aunt and I yesterday that hope was all she had. She doesn't care if they lie to her, it's what keeps her going and keeps her fighting. As we packed up some her stuff at her house she said that she's angry and depressed. Here her tumor has shrunk drastically and even detached from the lung wall...and they won't let her enjoy that good news. She said to her oncologist, "So, since the tumor is almost gone..." And he interrupted her and said, "Oh no, it's not GONE....it has shrunk. But you still have cancer in your pluera sac other areas..." She said, "So what do we do about that?" And he said kind of matter-of-factly, "well, that's your cancer.....you'll live with that and we'll monitor you."

I just wish I was there to hear what he said and how he said it. Because we have LOVED this doctor. He's been so personal with us. Such a fighter. So excited about her response to the chemo.

So, I'm going to try and go see him, alone. The nurse didn't know how to schedule me yesterday when I called since I'm not the patient. Maybe I'll hear it differently. I also want to tell him what she said to us about his change in attitude over the weekend.

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I read your post and know what you are going through, has your mother applied for SSDI? She would be an automatic approval because of her stage.

This would at least lessen the financial burden so she can concentrate on her health, and maybe get that house ready for renting.

My prayers are with you, Michelle

P.S. Venting helps!

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Tell him that "hoping" for 3-5 years is a blessing...that in 3-5 years there may be MORE on the horizon for her to try to keep the cancer at bay or get rid of it completely.

There are some on here who were given months, who are still here YEARS later.

Tell him you are not looking for false hope...but the REAL truth is, you know some stage IV survivors here who have been living with or cancer free for years. THAT is the truth. THAT is the hope your mom wants to hang onto.

If they are not willing to fight, when your mom is willing to fight...then they are not the right medical team for her.

Getting a chemo "break" is smart when her counts and system keep going down, but that doesn't mean the end of the line.

Lay it out for that onc. and let them know how badly what they said and HOW they said it affected her.

Am wishing you lots of luck and success and continue to send positive thoughts and prayers for your mom.

Keep us posted!

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"So, since the tumor is almost gone..." And he interrupted her and said, "Oh no, it's not GONE....it has shrunk. But you still have cancer in your pluera sac other areas..." She said, "So what do we do about that?" And he said kind of matter-of-factly, "well, that's your cancer.....you'll live with that and we'll monitor you."

--Please know that I am asking the following with a very good heart and intentions.

What is wrong with what he said? I mean, that's the absolute truth and it doesn't seem even remotely harsh.

Seems like a no-win situation for a professional whose expertise is sought. If he lies and says, "yeap, it's all gone," how does he prescribe future chemo or targeted therapies to a patient who supposidly has no more cancer? If he tells the truth and says "you'll live with that and we'll monitor you," his patient becomes depressed.

As a suggestion, why don't you ask your mom to authorize you to be the only person to discuss/receive all information on disease/treatment/lab. That way you can talk with the doctor frankly and report to your mom only what she wants to know.

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What was wrong with his statement and attitude was that she felt a different "vibe" from him that day and that day only. He has always been cheering her on with good news. But that day he sounded more like the very frank & honest pulmonary specialist.

Her oncologist usually mentions the facts and has never lied to us, but he boosts the good news and mentions the bad news in one sentence or less. He smiles and gets her hopes up every time. He tells her that he sees fighters and miracles all the time in his office. He tells her not to worry about what her Pulmonary dr. says because in the oncology department, they see the patients who beat the statistics all the time. He tells her that she amazes him because her body is fighting back in every way...she walks out of his office feeling that she will be here a long, long time....

But this time he was different. He was much more frank about the status and much less of a "cheerleader" for her. And like Mom said, she's not asking for false hopes, but she needs someone (like her ONCOLOGIST of all people) to sound hopeful and never give up. WHat does it hurt to tell someone to keep fighting....to not give up hope....to keep fighting from within with every emotion they've got????

The doctors only control the medical part of healing. Each person has a part in their own treatment. And that comes from hope and believing that they are NOT a lousy statistic. If a patient believes in a doctor & suddenly that doctor decides to get "real" for a moment and takes that hope away, what does the patient have left to fight with?

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It will be interesting to see how you read the oncologist's vibes when you meet with him. Maybe he missed your mom's "almost" and responded accordingly. Or maybe that, coupled with a very rough day and being out of sorts for any number of reasons, caused him to speak in that manner. Not an excuse of course, but we all know doctors are human -- most of them, at least! Since he's been consistently positive in the past, if you detect no sudden shift when you see him, maybe your mom will be willing to give him the benefit of the doubt and chalk it up to a temporary miscommunication.

Also, if he verifies that it's a chemo break or vacation rather than the end of treatment, that should lift your mom's spirits. More so as those chemo side effects start to fade.

Aloha,

Ned

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tjrasmom, thanks for explaining.

I think meeting with her Oncologist is going to help immensely.

From the quotes you posted earlier, he really seemed to have been directly responding to your mom's question/comment about the cancer being gone, rather than having arbitrarily burst her bubble. I think you're both very lucky to have found a great doctor who's been so positive and upbeat (my mom's Oncologist is a gem of the same, rare kind) and I'm glad you're going to extend him the benefit of the doubt and talk with him.

It sounds like it was an alignment of expectations - that the attainable goal is remission (and that it's been achieved - which is marvelous!) vs. the unattainable goal of a cure.

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Why did I have to read this just before going to bed?? I am so angry that I will be awake all night.

We look to doctors and medical professionals to help us along the path to either recovery or at least a dignified ending to our lives. Point exactly - it is OUR lives, they are not the ones who will ultimately have to be taken by this illness so how can they NOT be everything but compassionate and caring in their attitudes towards us. I had a PA who dead lied in my face about why she gave me wrong CAT scan results and raised my hopes - BOOM - I fired her butt!! I now have a new one!! Sure, everyone has bad days, but when you work with people who have a life-threatening disease, you need to leave that attitude at home!! Hopefully, when meeting with the onc. yourself, you will get a different "take" on what he meant. And I would hope that he would call your mom and personally apologize to her for making her feel the way she did!! It is just unacceptable!!

As far as the cable company goes......how can people be so cold-hearted is beyond me. To say that only a death cert. can get a bill voided is .....well, I can't use that kind of language on-line!!

You sure do have a lot on your plate and I do hope things begin to get better for you and your mom. Keep up the good work with being her advocate - she is blessed to have you in her corner.

My prayers are with you both!

Patti B.

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Collection Agencies will say and do anything to get there money from WHO EVER! Most times Collectors work on Commission. Some states have laws as to how far they can push people.

As for all the doctor hoolah, it sounds to me like you need a HUGE HUG as well as your MOM!

((((((((((((((((tjrasMOM))))))))))))))

Take a tape recorder to every doctor's appointment. I use to do that and I found it to be very helpful. 99% of doc's are comfortable with tape recorders.

Have they offered Tarceva to your mom? Is that am option? I know it's very hard on the patient and the family when the doctor's stop chemo's, but when the blood counts run havoc they really have to stop them sometimes. But they should have at least said something to her that this was a Chemo Break time!

Sounds like your doing a very good job of trying to keep things in order. It's not easy to do. Good luck and give mom a hug from one LC Survivor to another! :wink:

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