My mom's breast cancer and our broken health care system

Hello my darling little blog! Yes, I've been neglecting you, but it's not because I found something better to do. It's because shortly after my last post, my mom went into the hospital through the emergency room for what turned out to be breast cancer that had metastasized to her spine, ribs, skull, hips, lungs, and sternum, which had fractured.

She had a mastectomy in January, and had been complaining loud and long ever since that she was in considerable pain in her shoulder and underarm. Then in early May I took her to the ER with severe chest pain. After they did the obligatory clearing for a heart attack, they decided she had something fairly benign called pericarditis. Prescription: ibuprofen and time.

Which didn't work. So we went back. And back. And back. I called, I went with her, I advocated fiercely and loudly and no doubt obnoxiously. They escalated her pain meds a bit, adding a low dose of Tramadol (half the dose my 100 pound dog gets for his mild arthritis, just to give you some idea) to the ibuprofen. They decided it was actually something called costchondritis, an inflammation of the cartilage in the breastbone that sometimes occurs after chest surgery. Apparently that, too, is treated with ibuprofen. As is their next guess: post-mastectomy pain syndrome.

They kept changing the diagnosis, but never the treatment: Ibuprofen. When that didn't work, and after I actually broke down and cried to her doctor, they had me bring her in again and they did yet another chest film. This time they found a fractured sternum, and sent her for a CT scan. We spent a week waiting for the results, during which she was in such severe pain she could hardly move, and I mean that quite literally. She was basically frozen, because even breathing was agony.

On Wednesday, June 24, she started to throw up. We assumed it was from the endless ibuprofen, so we stopped it. Of course, the pain escalated immediately, and I said a big "fuck you" to whoever came up with her Tramadol dosage and upped it dramatically. But early the next morning the nausea, the vomiting, and the pain were all so severe I simply got her into the car somehow (not easy when you can't move or stop vomiting) and took her to the ER.

Where they read her CT scan and discovered she had what appeared to be cancer in her bones. The disintegrating bone had spiked the calcium levels in her blood sky-high, causing the nausea, vomiting and some confusion, too.

Allow me to break the narrative for a moment to talk about pain. Bone cancer pain is said to be the most severe of all pains. When my dog Raven had bone cancer, they loaded her up on pain meds until we got her leg amputated (which eliminated the pain entirely, by the way). They had her on MORPHINE, folks. For at least 6 weeks my mom had been in that kind of unendurable pain. We'd been repeatedly to the doctor, urgent care, and ER complaining about it. She'd told numerous providers that her pain level was a 10 out of 10, "worse than childbirth." Was there not some fucking genius in the entire UCSF Medical Center system who saw that as some kind of red flag?

Certainly the nurse who saw her in the ER the first time didn't; he was too busy telling her that her pain "couldn't be a 10; if it was a 10, you'd be writhing on the floor." Because he told her that, she started under-reporting her pain from that day on. Even so, she still said it was an "8 or 9" every time she was asked.

I have a newsflash: that kind of pain is not touched by ADVIL, you dumbfucks.

What really kills me is how hard I pushed these doctors to do more for her, and it was like pushing on a brick wall. I'm assertive. I'm informed. I'm willing to argue with authority. I'm willing to be hated. I held nothing back. I yelled, cried, and demanded things. And it still took 6 weeks for them to go, wow, yeah, maybe we need to put her in the hospital and get her pain under control.

Which, by the say, took a week once they got her there, during which time one of the drugs she was on was, you guessed it, morphine.

While she was there  they did some more tests, and a few oncologists dropped by to see her. They said they were from her oncologist's practice. "I don't have an oncologist," she told them.

She did, though, they informed her. Some doctor she'd seen once, a month or so after her mastectomy. My mom had told her that she had pain in her shoulder that was worse than childbirth, and this doc had said she had a frozen shoulder and should take ibuprofen. (Are you sensing a theme here?) She also explained my mom's future treatment options in a way that left my mom completely confused (and let me mention that my mom, who is 73, is intelligent, educated, and has no cognitive impairment, although her hearing is iffy sometimes). She never asked my mom to re-state what she'd been told to ascertain that she understood it, nor did she follow up. She was also, according to my mom, dismissive and uncaring.

So, no, my mom said, I do not have an oncologist. Even in her morphine fog, she was clear: I'm not seeing her again.

The two male oncologists from that practice basically told her politely worded versions of "You have no choice," at which point I said, "If my mom is going to be fighting for her life, it's going to be with a doctor who she likes and feels a connection with. This isn't open for discussion." They slunk away, but on her discharge, there was no mention anywhere that she wasn't seeing this doctor again. No, instead they scheduled an appointment with her, and had her set up some follow up tests, including a PET scan they'd been unable to do in the hospital because my mom can't lie flat or put her arms over her head, due to her fractured sternum and the terrible pain in her shoulder.

I personally told ever single doctor and nurse and the radiology people that this was a problem. I saw several of them write it down. And yet it never made it into her chart, and again and again, as recently as two days ago, they keep scheduling her for a PET scan she can't get.

And I only wish this was the only thing that we told them, or that her doctors said, that was supposed to be in her chart but wasn't. We were told about changes to her meds by her doctors, she refused certain drugs because they made her vomit, some tests were ruled out because of the pain the position would cause her -- none of this ever made its way into her chart. My brother and I never left her, because every time we did, someone would come in, wake our mom up, and try to give her a med she wasn't supposed to have or take her off for a procedure that caused her pain.

At one point my sister in law, who is a pharmacist, asked her doctor to order her pain meds to be given on a schedule instead of only when she requested them. Isn't it better, the doctor asked, to just give them when they're needed?

Sure, I told him, "if we asked for the meds and five minutes later they came. I have yet to see them come sooner than 45 minutes. Sometimes it's an hour. And I've had to ask as many as five times before they come." He ordered the change.

I walked up and down the hall between her room and the elevator a hundred times during that week, and saw many elderly patients lying in their rooms all alone. With the tiny part of my mind that wasn't totally focused on my mom, I wondered what happened to people who don''t have family members or friends with them every minute. I think if I ever find myself in that position, I'll jump out the window before leaving myself at the mercy of these very nice people (yes, nearly all were very nice) caught in what has to be the most badly managed communication system ever devised.

Now my mom is home. Her pain is much better, but we're still waiting to get an appointment with the oncologist and find out what's next. She's still unable to do most things by herself, but at least she's reasonably comfortable even if almost entirely unable to walk more than a few steps.

And my life? Turned completely and utterly upside down. In addition to the fact that my mother and I are very close and always have been -- we've raised dogs together, traveled together, and been buddies for all my adult life -- we share a house. We each have our own apartment, hers on the ground floor, fortunately, since she's currently in a wheelchair, and also fortunately connected by an indoor staircase. But I haven't had a good night's sleep since June 24, and the toll it's taken on my ability to concentrate, the amount of work I can do, and how much effort doing my work well... that's why I haven't been around.

Not to mention my new habit of yelling at health care providers. Who again, are all personally very nice. It's just the system? In case you didn't know, it's broken.

Comments

[TheWeyrd1]

I'm so sorry for your mother's situation and how it's affecting both of you. My mother endured a similar situation taking care of my dad. Fortunately, she had my brother and decent hospice care when it was needed. I hope you don't get to that point anytime soon, though.

[Lori]

I can't even imagine. What you describe should be unacceptable, inconceivable even in a modern day heath care system in a first world country.

I'm sure you are tired, frustrated, worried and sad, but I'm also sure you are the best advocate anyone could ever have.

[Red]

The pain thing? And the meds thing? And the leave for a second and have some student take them off somewhere or try to make them sign a waiver through the cloud of Morpheus? That's why my husband, nephew, and two brothers-in-law never left my sister-in-law alone two years ago.

Broke? Fuck that. More like FUBAR.

[EmilyS]

oh dear, how unspeakably horrible. I learned when my dad was dying that the system is indeed designed to make patients and their family/friend advocates as helpless as possible. And "niceness", as I'm sure you've learned (or if not, should) is a weapon in that system. Being "nice" to "nice" people who are essentially passive-aggressive doesn't accomplish anything (I personally don't believe that "5 minute wait that lasts 45" is accidental, at all, or a necessary part of a rational system). Sometimes you find a truly competent and caring provider, and those are the only allies worth having.

[Mike Fry]

This story is as sad and tragic as it is predictable. The health care system in this country is beyond broken. I suspect you also give too much credit to the people in the system. They may seem like nice people to your face. But, anyone who tolerates a system like that is not a nice person, in my book.

A few years ago, I had an experience with my own mother in the health care system that convinced me of this.

Mom fell and pretty much destroyed her knee. Off to emergency we went with her at about 10 in the evening. The place was packed. She was in extreme pain, the massive swelling, bruising and hematoma were pretty obvious.

No one got to her until the something like 2:30 AM. Finally discharged her at about 5 AM, after only taking x-rays and sending her home with a knee brace.

By the time we left, the place was empty. Folks that worked the night shift were pretty casual and relaxed by then. The draped in area where they kept my mom was across from a staff area. As we were getting ready to leave, we overheard a group of the staff laughing about how, because they managed to make everyone wait so long, they had a record number of people leave without getting care. They seemed to believe that people who left didn't really need care.

A year or so later, mom needed to have that knee replaced. I can't help but wonder if they hadn't gotten the swelling under control sooner, if the damage couldn't have been reduced. I can't help but wonder if there was not some possible surgical intervention that may have helped that night.

I am certain that the staff on duty could not have cared less about my mom, or any of the other patients they were responsible for. I hate to even think about how much we all pay for this kind of "service". It is sickening.

[Cheryl]

I'm glad your mom is back home. Being in your own place with your own stuff is so much better and easier to heal when not having to worry about being harassed by 'well meaning' staff who decide you need blood gasses done two minutes after you finally fall asleep after a night of pain and suffering.

Your mom's experience sounds like my Aunt's experience with Kaiser. I don't know how those people stay in business.

It does make you wonder about the medical establishment that is trying to tell us that a public option would be horrible as folks would not get the wonderful top notch care they get now with today's private insurers. Yea right. I'm ready to learn Dutch and move to Holland for their nationalist, socialist healthcare which puts ours to shame.

[KathyF]

I'm so sorry for what you've been going through.

But hey, at least you have the best health care in the world.

[Kathleenmrca@aol.com]

What a dreadful story. As a breast cancer surgeon I have seen what is called "tumor flare" twice in my 15 year career. Typically the patient has what is considered to be operable and controllable breast cancer; but following surgical intervention (these days everyone, but me and a few others, are so gung ho for mastectomy that women are just checking their breasts at the door of healthcare) there is an enormous, aggressive, all-consuming growth of cancer everywhere. In the last patient in my practice that this happened to, she developed chest wall mets in the Recovery Room (!!!) following her delayed reconstructive surgery. I think it is unacceptable that you have to wait even a day to see the oncologist for further care. God speed. Dr. Kathleen Ruddy, Founder and President, Breast Health & Healing, breasthealthandhealing.org

[Cathy Reid]

It is so sad that your story is all too common. I lost my Mom last year to medical errors (she went in with a dislocated hip and died 59 days later with gangarene and massive blood loss) and my husband to male breast cancer (yes, I said my husband). These days I am a doctors worst nightmare and I tell them so upfront. It it doesn't feel right to you or your mother keep harassing them. Don't take no for an answer. Find an oncologist you are comfortable with and who will actively listen and address your concerns. Most importantly, don't wait; when battling mets time is not your friend. I wish you and your mother the best. Cathy Reid, Founder, Out of the Shadow of Pink, Male Breast Cancer Awareness, outoftheshadowofpink.com

[Kathleen Balestreri]

Ms. Reid: Please contact me as soon as possible via email so that I might assist you with your mother's care at the UCSF Medical Center. Kathy Balestreri, UCSF Medical Center

[Lisa in Cape May County, NJ]

Before I underwent bilateral mastectomy in 2004, I told everyone within hearing distance--repeatedly--that I could not tolerate opiates. The hospital's pain management specialist, however, did not consult me until I arrived in the recovery room after my seven-hour surgery. Through my post anesthesia fog, I managed to reiterate my powerful wish not to be treated with opiates--a wish reinforced by my husband, who was by my side. The specialist responded that she'd prescribe dilaudid, breezily adding, "You'll be fine!"

I was not fine. Pain meds were delivered by PCA, but because I'd just been through an ordeal of sorts, it took me a while to figure out the source of my nausea. I stopped the PCA cold in the middle of the night, preferring to tough it out. When the pain management person stopped by the next morning, she was horrified that I wasn't being treated for my pain. Why, she demanded, hadn't I called her in the middle of the night. To me, the answer seemed obvious.

During rounds, the docs all seemed stymied about how to deal with me. Now, I am not any kind of medical doctor, but I make it a point to be an informed medical consumer. I demanded Toradol, an injectable NSAID. The doctors wrung their hands, worried that they would have to monitor me closely if they complied with my request. Ultimately they capitulated. Thereafter, I did well and experienced no more pain. Last year, my breast surgeon told me that her current patients think she is performing painless mastectomies because she is prescribing Toradol.

I have had the same thoughts as you did, Christie, regarding those who are alone, or confused, or otherwise unable to help themselves when dealing with the medical establishment. More often than not, I have these thoughts when struggling with my insurers--always a through-the-looking-glass experience. Our health care system is hopelessly, hopelessly broken.

Every good wish for better treatment for your mother, who deserves not to be in pain. This is basic.

[Mallory Kates]

Christie, I'm not sure how I found this blog but within minutes I wanted to reach out and do something...anything! Your story is just terribly familiar to too many (including me) but I'm really heartened, as I hope you are, by Kathy Balestreri, the nurse who has reached out to you. I wish you well and I am now a forever fan.

[CathyA]

Ah geez Christie, I feel for you and certainly your mother, who is stuck in medical hell. I learned how to be a screamer at medical personnel also, had to use it with two family members.

Those people may have been "nice" but quite frankly I think most of them should go work in a real factory, instead of treating medical clinics and hospitals as factories with products.

I have zero faith in our medical system and how medicine is practiced today. I am amazed at how too many general practioners lack common sense. Something wrong? Let's just add another pill to the mix, even if it was one of the pills causing the initial problem to begin with. Oh, unless of course you're in pain, then you get tylenol.

All you can do is wake up every day and hang in there with your mom. Wish I lived around the corner and could help.