Balance. It’s critical to so much in life.
Early in May, I had another round of tests and scans, all in one very long day. I had an echocardiogram to see if my chemo (Godzilla), has negatively affected my heart since it is cardiotoxic. Then I had a PET scan, followed by a CT scan.
I had to advocate for myself in order to get those scans, because my oncologist preferred to make the assumption that I’m ‘stable’. She wanted to simply continue with Godzilla infusions every three weeks and change nothing until I ‘feel symptoms’. Huh?
“So, how will you monitor me without scans? How will we know if cancer is progressing or not? You want to wait until I can’t breathe? Until I begin to cough? Or feel crushing bone pain?” I tried hard not to sound stunned, but even more than that, I tried hard not to sound pissed.
She’d be monitoring my tumor markers instead, she told me. You mean the blood tests that have consistently shown that my tumor markers are all within normal range? THOSE tumor markers? ….seriously?
I got a shoulder shrug and a demure smile in response. I glanced at my husband. He was as baffled as I was. BUT…I’m quite sure she’s the smartest in the room when it comes to cancer.
As if she was new to my case, I reviewed it with her. I’ve never felt symptoms in all this time, aside from the side effects of chemo. From the beginning I’d been getting scans every three months, as is protocol for active stage four cancer. And scans are the only way to find out if my cancer has actually progressed. I know this as fact, because late last year my PET scan showed ‘extensive progression of disease’…and she promptly upended my entire treatment plan. Godzilla was brought in to replace those two sniper drugs I’d been getting.
So, do I want to wait around now until cancer pain rears its ugly head? That would be a resounding NO. But my oncologist reiterated that I should just wait and see, as she would not be ordering scans.
I stewed for two weeks over it. Then at my scheduled appointment with an oncology nurse, I pressed her about it. “Isn’t it time I get scanned again?” She glanced at her computer screen and immediately said “Yes! It’s been over four months. I’ll get the scans ordered for you.”
I told her what the doctor had told me…about holding off on scans until I had physical symptoms of cancer. Bless her heart, she didn’t hesitate and said she’d put a call in to the doctor herself and get them ordered. MY HERO! And, true to her word, the following week I had my scans. All in one day.
But the last thing I was expecting was a call the very morning AFTER my scans. Caller ID displayed the number of my oncologist’s office. Odd, I thought. I never get results this fast.
But the voice wasn’t the voice of my oncologist or any of her staff. It was a voice only vaguely familiar to me. He identified himself as one of the partners in her office, explaining that he was calling to deliver my test results since she was away for the week. Whoa, I thought. Results so soon?
His voice was somber and flat. I could picture him. I knew him only by sight, sometimes he passed through the reception room, unsmiling, unfriendly. But I wasn’t his patient, so what did I care?
He got right to it. drawing out the first syllable for emphasis apparently. “Unnnnfortunately…”
WHAT THE HELL KIND OF WAY IS THAT TO START A CONVERSATION WITH A STAGE 4 CANCER PATIENT YOU DON’T EVEN KNOW?
It went downhill from there. For me anyhow. The conversation was short and awkward, primarily because I immediately retreated inside my own head. I really strained to stay ‘present’…in an effort to hear him out. But I was already in some far distant place, so my ears and his words weren’t exactly compatible for optimal effectiveness. But I did catch his last sentence clearly…the one about my own doctor returning next week and likely having other drugs to try. His delivery tone wasn’t any more upbeat with that news either, unnnnnfortunately.
For the first time in my life, I thought I might actually hyperventilate. And I knew I had to make a really quick decision. Fall completely apart or find my balance.
Easy choice for me.
Hubby was getting ready for his day, so while he was turned away from me, I angrily blurted the test results. Immediately he stepped close to wrap me in his strong arms, and I could see the sheer pain or maybe fear in his eyes….but I stepped away. I just couldn’t. If I let him get those arms around me, the tears would be an absolute flood and impossible to stop…clearly for both of us.
So, I did the only thing I knew to do. I simply chose to pretend I never got that call. (What call?)
I marched into my day, getting ready to leave for work with record speed. I walked out the door within minutes, and pulled away from the house. What call?
I cranked up the radio determined to stop thinking about anything at all. I let the music just carry me away. And then it became suddenly talk radio. They were discussing the idiots who pay upwards of $29,000 for some other idiot to pick out the perfect baby name. The radio folks had my undivided attention. I kid you not. It’s really no joke: http://www.goodhousekeeping.com/life/news/a37971/professional-baby-namers/
The next thing I knew I was parking my car almost 20 miles from home. No recollection of how heavy the highway rush hour traffic was or wasn’t. All I know is I found myself pulling into that familiar parking spot some forty five minutes later. A tear suddenly escaped as I thought of my hubby, left to fend with this news on his own. But truly, I just couldn’t go there and realized only then that I probably shouldn’t have said anything at all to him. But, too late.
It was a very busy and full day at work. I was completely absorbed in financial software, spreadsheets and bank statements. It could not have been more perfect. And by the time I left the office to return to my car, I felt almost like a normal person, still thinking about those complete imbeciles who pay over $29,000 for some complete stranger to come up with the perfect baby name. Damnit. Why didn’t I think of that?
My next scheduled appointment with my oncologist was still ten days away. I thought that maybe she’d call me, just to go over the results prior to my appointment. (But nope… that didn’t happen).
So I became immersed in the evening hours of the subsequent passing days by doing my own research on chemo options and drug combinations. On clinical trials. On revolutionary medical equipment and technology. On cancer research institutions around the country seeking out the best of the best. Turns out two of the top ten are right in my own backyard.
Now, more than ever, it just seemed to be a good time to seek out another medical opinion. Get a second set of eyes on my case.
And I came up with two names, both highly skilled oncologists heavily involved with clinical trials specifically studying cancers like mine. One doctor at Stanford and one doctor at UCSF.
I alerted my amazing and wonderful Internist as to my intent. (She bird-dogs everything for me. There isn’t enough gratitude in the world for her).
I told her I’d reached out to the guy at Stanford first. (My daughter went to Stanford. I thought maybe that would play in my favor…LOL). The good news: I could get an appointment, but the earliest appointment I could get was six weeks out. The bad news: it would not be with the doctor I wanted to see. I’d only be able to see the one guy they have who offers consultations and second opinions for their cancer center. And if I’m going to see that guy, I may as well go to any guy at all. Because that guy is NOT the guy I specifically want to see. So, never mind.
Then I called UCSF. Turns out my internist had just greased the wheels for me there. I got an appointment the very next week with the very doctor I did want to see. And it was scheduled just a few days AFTER I’d be meeting with my own oncologist anyhow. Perfect.
I was a bit nervous going in. I already had the news but did she know I already had the news? And if she did, why the hell did she make me wait ten full days, KNOWING I had this crappy news? Would her tone be more encouraging than the other guy from her office who called me so early that morning?
Nope. She began with the exact same word: “Unfortunately…”
It’s very clear to me that there needs to be a refresher course for oncologists on how to deliver news no patient wants to hear. I have a few suggestions. How about this:
- (in an upbeat tone of voice) So, your scan results are in! As I look at these, they give me a clearer picture of what our next steps should be. Not the results we’d hoped for, but not to worry! We have other options. OR
- (in an upbeat tone of voice) well, it seems that Godzilla has taken a break on this round, so let’s try something different to see if we can’t improve things here. OR
- (in an upbeat tone of voice) Here’s your results. Lets go over them together so I can explain what they reveal. It’s not doom and gloom time yet, but let’s discuss next options. OR
- (in an upbeat tone of voice). So, talk to me. How are you feeling? (I reply that I’m feeling quite well, actually, all things considered). Well, that’s just incredible! You are one amazing study on how to just push forward with this nasty disease in tow. So let me tell you what the scans reveal so we can think about the best way to proceed here. And when we’re done, you and your husband should go enjoy a nice dinner with a glass of wine (just this once) to celebrate that you are doing so incredibly well, in spite of what this scan report says.
After a sobering discussion (but not all that wordy since she is a woman of very few words herself), I asked a ton of questions and offered thoughts of my own about next, or alternate, or additional drug options (“Now that’s intriguing…” she said after I mentioned one new drug in particular), she concluded that I should simply stay the course with Godzilla.
Didn’t see that coming. She said that although there’s progression of disease, it seems that Godzilla is still the best option at this time. Not too happy, I managed to convince her to add another drug as well, one of those sniper drugs I’d had last year…it had worked for 13 months before she traded it out. Maybe Godzilla just needed one additional sniper on his team. “If I can get your insurance to cover it,” she replied.
Hubby sat up straight and leaned in. With the directness of a skilled senior level Manager of All Things Complicated, he asked if insurance played a role in her decision to not do scans.
Bingo. The elephant in the room suddenly appeared. Insurance companies dictate much of medicine today. They have the power to deny treatment, scans, whatevers. And clearly my doctor found that battling with my lovely Obamacare insurance wizards was quite stressful.
So, can you guess how that made me feel?
At the very end of the appointment, I told her I was getting another set of eyes on my case in the form of a consult at UCSF. If she was surprised, it was only momentarily. She said it’s always wise to seek another opinion. She also said UCSF offers many clinical trials that could be of use to me down the road (I already knew this from my hours and hours of research). We stood up to leave and as she came around her desk, I gave her a quick hug. Awkward for her…she’s not much of a people person…she’s more of a DOCTOR person, if you get my drift.
UCSF: We arrived a full hour early, because I wanted to be sure we could find parking. I knew Clinton was coming to San Francisco that day, and I had no idea where the event was, but I didn’t want to take any chances with parking. Hubby humored me and we left the house at 2 p.m. for a 4:30 p.m. appointment (stop snickering all you peeps who KNOW exactly how far we are from the city!)
All my medical records had been sent ahead of time, but I hand carried my pathology slides from 2014. I was fully armed…with two pages of carefully crafted and researched questions. Lots of them, very specific to my scan results, my pathology, even my options when ‘the end’ was well within sight.
Side note: No, I don’t dwell on dying. We’re all dying. You. Me. Those guys. Them. All of us. But as long as I pretty much know HOW I’ll be dying, I like to plan ahead. For my loved ones, I want it to be a calm peaceful experience, not a horrific or terrifying one. So yes. I needed to know what this doctor at this cancer research institution thinks about that too.
So, with four duplicate sets of questions, all collated and stapled neatly, I was more than well prepared. Since we’d arrived so early, I actually started to worry that I might become distracted completely just by sitting around mindlessly. I didn’t want to lose any focus on the purpose of this mission, so I debated about how to STAY focused with all this time on my hands.
We weren’t in the reception room five minutes, when my name was called. WOW! Getting here early paid off!
A nurse took all my vitals. Hubby came into the exam room with me, where I was told to get into an exam gown. Lovely. Then we waited for well over an hour before anyone else came in. I wondered why I had to be in an exam gown. JEEZUS. You can’t SEE it. But trust me. It’s there. PET and CT scans don’t lie. Wasn’t it obvious I have cancer? And who f-ing cares what my temperature is? I have stage 4 cancer! WHAT DIFFERENCE NOW DOES IT REALLY MAKE? (…wait, where have I heard that before?)
It was a very small, windowless and claustrophobic exam room. Hubby napped in an uncomfortable looking chair, while I took pictures of him and sent them via text to our daughter.
Look! Dad’s so bored he’s taking a nap! She worries about me from thousands of miles away.
I sat on the exam table, swinging my feet to and fro…until my back began to get tired, and then I moved over to the desk chair clearly reserved for the doctor, since it was perched in front of a desktop computer, with a monitor flashing instructions on how to detect a stroke, of all things.
Hubby continued to snore and I listened intently for sounds from the outside world. For a big medical center, it seemed damned quiet out there, unless folks were skulking around silently. The door was closed, so I couldn’t be sure. I glanced at my watch. 5:15. Just us and the janitors now. The clock kept ticking.
FINALLY…footsteps. Hubby snapped to attention.
Two people swept into the room with white coats and stethoscopes. A ‘Resident’ and a ‘Fellow’. (It’s a teaching hospital, after all). I vacated my seat in front of the computer. The Resident never uttered one word after her brief intro, but she quickly sat in a small side chair pushed back into the corner. From there she sat directly behind the Fellow who positioned herself at the computer. I went to climb up on the exam table, but was told to take a seat in the chair next to the desk. It was already piled high with my purse, my glass water bottle carefully propped within my clothes, and the file folder holding my multitude of questions along with additional sets to hand out. Oh…and the large puffy mailing envelope that held the pathology slides I was told to bring along (and had to pick up from yet another location in the city where pathology slides are apparently stored). So I pushed it all off the chair and down to the floor. I took my seat beside the desk.
The Fellow was already clicking away on the computer, and she launched into my medical history. I kept staring at her hands…she typed faster than the speed of light. I’ve never seen anyone type that fast…with any accuracy. It made me nervous. She typed like a crazy woman… even between questions which only required a YES or a NO answer. Wow. Typing. Just typing and typing and more typing. Clickety clickety clickety…
What the hell is she typing…a manuscript? I wondered. I leaned over and peered around to see what the computer monitor looked like…she had three different windows open…all side by side. Good grief. Seriously? Wish my vision was sharper…what the hell is she typing?
I’d spent ninety minutes myself just a few nights earlier, answering all the online health history questions that UCSF preregistration required before they’d confirm my appointment. And I can tell you, it did not require too much typing. Just going page by page by page…set up for those who never work on computers…with instructions like: When you completed this page, click here to proceed to the next question, or click here to return to the previous screen.
Clearly those ninety minutes were a complete waste of my time, I realize now. Because she’s still typing, typing, typing maybe reinventing the wheel.
Abruptly, she glanced up at me, smiled. Reminiscent of that scene in Meet The Parents, where Ben Stiller goes to the airport to fly home and the lady behind the ticket desk types endlessly without a word. Endlessly.
Finally, “Feel free to ask me any questions you might have.” Her fingers never slowed down. Clickety clickety clickety…
I told her I have lots of questions. I reached down for my folder and pulled out a copy for her. Her eyes got wide as she took a quick look. While still typing.
OMG…C’MON! WHAT THE HELL COULD YOU POSSIBLY BE TYPING?
I was on the verge of getting slap happy, so I blurted out instructions. “You can give these to the doctor, this copy is for her,” I said. At long last, silence. She took a very quick glance at page one and then turned to page two. And handed the questions back to me. Well, then. She’d be sure to give them to the doctor ahead of time, but for now she wanted to examine me.
I hopped up on the table. She put on purple latex gloves (stylish) and her exam took about two minutes. Yup. Told ya. You can’t SEE the cancer. Or FEEL it. Just read the god damned scans, ok?
When she was done, she pulled off the latex and then voiced her opinion about my cancer in general, by starting off with; “In my experience…”, which, as everyone in the room knew, was quite limited. Her ‘experience’ told her that my pathology from 2014 was clearly showing a new primary cancer, not a recurrence of my 2003 cancer (there has been lots of speculation over that point.) And, this opinion of hers was based on the histology of the two pathology samples, which were very different from each other. The very different histologies are what brought her to the conclusion that it was not the same cancer from 2003 recurring again in 2014.
I didn’t question her at all. I was an obedient patient. BUT, my own research shows clearly that she was incorrect. There could be multiple lesions in one patient of the same type of cancer, and some of them might have different histologies. One lesion might have a gene mutation, the other not. One might be estrogen receptor positive, the other not. Yet both lesions are the same type of cancer (breast, lung, etc). So I quickly discounted her opinion, based on my own limited research experience. But I didn’t harbor any ill feelings towards her…this is a teaching institution after all.
She then stood and gave reassurance that the doctor would be coming soon. As she exited the room, I smiled at the mute Resident who followed her out. “I hope you’ve learned to type REALLY fast!” I said. She busted a big smile, and in heavily accented English she said she was still in training.
Hubby and I were alone once again.
Another eternity ticked by. I reminded hubby to be ready to record the conversation with the doc. Before he’d nodded off on his nap earlier, I’d shown him the app on his iPhone that would allow him to do this (FYI: it’s in the Utilities folder, and called Voice Memo).
I figured our conversation with the doc had potential to get really science-y…and I might become like a deer in the headlights. I wanted the ability to go home and re-listen to her explanation/comments again and again… if need be.
It was sometime just after 6 p.m. when the doctor came in (followed only by the Fellow with Flying Fingers) and it was close to 7 p.m. when she left us. She had already reviewed my 2003 pathology report, in great detail and had compared it to my 2014 pathology report. I handed her my lab slides and she said she’d be sure to get them under a microscope for further assessment. And immediately, she expressed her opinion that my 2014 cancer is very VERY likely a recurrence of my 2003 cancer, which in her mind was ‘quite probably’ NOT assessed accurately to begin with, due to the testing methods they were using back in 2003.
Nowadays, testing techniques are vastly more sophisticated, and in today’s lab, that cancer from 2003 would likely be much more aligned with the histology of my 2014 slide, which had the unexpected gene mutation. So NO. This was not a new primary cancer. It was the same cancer from 2003 that was very early stage one, rearing it’s ugly head all these years later as stage four.
I slyly glanced over at Flying Fingers. You’ve still got a lot to learn, kiddo.
And then she immediately addressed my list of questions, starting at the very top. She spoke concisely, yet with depth and perspective I’d not ever heard. It was the best medical meeting I’ve ever had. She readily spoke about how she’d approach my treatment plan going forward and with specifics. She expressed a clear objective for me… to keep me asymptomatic for as long as possible with the best quality of life possible.
She actually concurs with staying on Kadcyla for the next several months, and without the other sniper drug I wanted. She said studies have already shown there is no benefit of those two drugs used in combo, only more side effects.
So, in summary, the scan results raised alarm bells. Yes, there is progression of disease. BUT she says the progression is actually miniscule! Love that word. MINISCULE. She explained to me that it’s NOT the amount of uptake of scan dye that is crucial (how much you light up). Because other things can cause that dye uptake, not just cancer.
It’s the GROWTH of the lesions or nodules that we care about. And those changes were
Rush hour was long over by the time we left the city. We stopped for dinner on the way home, and I had a glass of wine. Enjoyed every last drop.
I have listened to that audio recording multiple times already, because the discussion indeed got very science-y. The part I am most happy about comes at the end, when I asked if she’d consider taking me into her fold at UCSF. “I’ve learned more from you in forty five minutes, than I’ve learned in two years,” I told her. “I feel SO much…. LIGHTER.”
Friday I had my last chemo at CPMC and said goodbye to the lovely oncology nurses and staff there that welcomed me so warmly each and every time. And I left a handwritten letter for my oncologist explaining that I’d made the decision to transfer my care over to UCSF.
So my next chemo will be right on schedule (still every three weeks) without skipping a beat. BRING IT. And I’ll be at one of the very best cancer research hospitals in the country. I just hope the unending parade of Residents and Fellows will take the time to type less and talk more. I’ve been assured that the doctor will in fact be monitoring my case closely…they’ve scheduled me to see her personally EACH and EVERY infusion day. And did I mention that she works closely with the guy at Stanford that I couldn’t even get in to see? SCORE.
The prognosis doesn’t change…but the perspective sure does. And it just feels so much better.
Thanks for following along, for all your well wishes, notes and encouragement. I treasure each one. For those who SEE me routinely, you know I’m doing well just living my life. One day at a time.
Don’t forget to #LiveTheDash
I am so glad you’re going to UCSF, doctors there are the best around. Your positive attitude and good sense of humor are extending your life as much as the medicine. When it’s my turn, I’ll be thinking of you. Keep it up!
Ann, you continue to amaze me. I marvel at your resilience and beauty coupled with the clarity of your writing. How you have been able to keep your sense of humor, temper and your kindness towards inept and arrogant specialists is a marvel unto itself. Every aspiring doctor should have your blog as part of their required training so perhaps a few would become more compassionate and human in their interactions with patients. I loved the suggestions for positive ways to disseminate difficult news. It sounds as though you have finally found at UCSF a doctor who really listens and is doing the kind of research you need, someone who will be as relentless as you have been in bird-dogging the best, newest trials and therapies. Keep it up!!
Thanks so much Mollie. I’d love to teach a class to med students about patient interaction. I knew that my oncologist wasn’t much of a people person, but I wasn’t there for her bedside manner…only her expertise in oncology. But at some point, I got the sense (whether perceived or real) that her focus wasn’t 100% when it came to monitoring progression of my cancer. So very glad my internist (the one you know too) has been on my team…she’s been tremendously helpful. UCSF begins a new chapter…this coming Tuesday is my first day there. Hope I don’t have all kinds of fodder to blog about afterwards 🙂
Judy, Sometimes humor is the only way to motor forward. And sometimes the driving range is the ‘go to’ place where I can really take a swing at cancer…when humor doesn’t quite take care of it 🙂 See you soon!
Thank you for pulling back the curtain on the wizards of the oncology world. The power of words mismanaged can have huge impact.
I like your suggestions for alternate ways to present news. Really like the word choice of your new Doc, minuscule, A Lot. I have found this whole cancering thing to be so much about reframing and translating. Glad you have found a compassionate and competent new doctor, leaving behind the ones with the “unfortunate” world view.
May your time moving forward be blessed with much laughter, love and light.
Warm wishes from across the blogosphere
P.s. A favorite funny bizarro cartoon that might fit:
Iris, the cartoon is spot on! Thanks so much for the well wishes. Right after I posted this, we were off on a road trip the following morning, so I’ve not had any time until now to respond, but want you to know how appreciative I am of your comment and support. I’ve bookmarked your blog site and will take a look in the next day or so. Seems that in addition to cancer, we might have horses in common?
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I held on to every word with bated breath. And with anger (doctors! nonpersonal! typing! nonresponsive!) and with delight (oncology nurses! MINISCULE! moving to UCSF!). Keep up the good work, Ann. You know we all love you and your spirit. You are amazing. And, by the way, so is your writing.
Thank you Pam! Looking forward to seeing you next week for lunch! xo
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I found myself identifying with your experiences in this account….not necessarily the specifics, but the seeming lack of investment by the first onc and its impact on you….the urgency of finding someone who would sincerely listen to your questions and provide meaningful, appropriate responses….the relief of knowing that your cancer care will be handled by an oncologist with lots of experience with metastatic breast cancer. Wishing you well in this new care center.
Thank you Barbara! Not sure how you found me, but I appreciate your taking the time to reach out and comment. Sorry for the delayed reply…immediately after writing the post, hubby and I took a road trip and I am finally getting caught up on things at home. Sending you all good wishes.
Thank you so much for sharing so intimately and so well! Sometimes I think my Oncologist is just doing the routine “oh, this has happened so now we prescribe this..” I think from now on I wil be more likely to ask if that is the best option for ME. Good luck with the new doctor and regime, let us know how you are! Xxx
Thank you Karyn for taking the time to comment and reach out! I hope you are managing well. I debated long and hard about going so public this time around (it’s my 2nd rodeo with cancer…the first time was in 2003 and I kept it under the radar for the most part). But once I got educated in 2014 (it was a fast steep learning curve) on what it means to be diagnosed and live with stage 4, I decided it was important to go public about it so that others who know nothing about stage 4/metastatic (that was me until 2014) can learn as they follow along. Thank heavens for the online support groups…I hate that so many of us have this diagnosis, but it is comforting to know that I’m not alone! Sending you hugs and hoping that you are feeling strong! xo
My mother had an oncologist that didn’t scan her. I wanted her to switch for so long but didn’t push her until she had seizures from it progressing to her brain. The new oncologist and his team were amazing and the care i thought she should of had from the beginning. Unfortunately it was all too late. But not for you. Congrats on making that choice while you still have choices. I know so much now that i wish i knew then or not at all.
Oh my goodness…so very sorry for your loss. Stage 4 is just an incredibly well kept secret from the population at large…the pink ribbon campaigns would have you think that they’ve about got ‘the cure’ for cancer. It’s been a huge shocker for me, since diagnosis, to find out that not only is that completely UNTRUE, but in the past 3 decades, annual death rates from MBC have not changed AT ALL! And, if that weren’t bad enough, only between 3 to 7 percent of all the billions of dollars raised in all these years have gone towards metastatic research. It is also incredibly unsettling to find that oncologists are still flying by the seat of their pants in so many ways when it comes to determining treatment…AND you have the insurance companies trying to dictate the treatment plan itself! It’s no wonder so many of us who are living with stage 4 feel misled. Whether or not I’ve made the correct choice in changing oncologists, at least I feel like I’ve taken some control, and made it clear to my new team that I need to understand the science of my exact circumstances, the ongoing research that might be of value to me and the options that are available when the chemo I am on fails me. I so appreciate your support, and taking the time to comment. Sending all good wishes! #Stage4NeedsMore