I’m not here to talk about the stuff well-meaning lay people say to us cancer patients. No one knows what to say. We’re all doing the best we can. However, I’ve been keeping a chronology of my “medical moments,” as I like to call them, and no time like today to publish them. Medical staff people from receptionists to the oncologists in charge of my care speak with me frequently. They have to! But, we’re all imperfect and there are some things that just don’t need to be said to cancer patients.
A caveat: I am getting amazing care. Shout out to my medical oncologist Dr. Robert Raish, OHSU Knight Cancer Institute. Gotta stay on that guy’s good side…
Another caveat: These moments, when gathered in a tidy package, seem to imply that I have extreme bad luck with stuff like this happening. Or that I have not gotten excellent care. Neither of these is true. My stories are NOT uncommon. And I chose and continue to choose very well for my care. People are rushed, and it is hard to have these types of conversations. We are all humans, and we just don’t say the right thing sometimes.
August 2012: at my annual exam with my CFNP I showed her a large mass in my breast. It moved around, I’d had plenty of benign fibroids in my breast before. The brochures tell you not to worry if you can move it around. Cancer attaches itself! I was getting a mammogram anyway, and she told me it did so not feel like cancer. Takeaway: Please, please do not act certain about things you can’t be certain of until imaging and biopsy.
September 2012: I love my surgical oncologist. She is an amazing woman, and I know that keeping me positive was important standard of care, if you will, for the crap I was about to go through. She told me, this is a bump in the road, a crappy year and you are going to get through it and move on. Except that a year and a half later I felt a lump in my neck and was diagnosed with metastatic recurrence to my lungs, liver, and many lymph nodes.
Jan 2013: The plastic surgeon… Sold me on the straight to implant reconstruction as it was the only way I was having reconstruction. For me, I was not about to do multiple procedures with tissue expanders, bla bla bla, and often be unable to swim or run. I was sold on the convenience of it, truth be told. I would not need a bra (I HATE bras), and as a person who wore a swim suit almost every day I thought it would just be mentally easier to have a little something in that section of my suit. What he failed to tell me, was that implants can be extremely uncomfortable. That they actually feel like the worst, most too tight bra you’ve ever worn, only 24-7. To this day, three years out from surgery, I can’t stand the things. It would have been good to have more information. What’s that you say? There’s so much information out there for the finding? In that year on that bumpy road, I was not alone in having a crap ton of really difficult decisions to make, while being dazed, confused, scared I was going to drop dead on my husband and kids, and feeling putrid 99% of the time to boot. And those cancer decisions? They are ALWAYS between things that are both Extremely unappealing. Give us the real information, please.
April 2013: The radiation oncologist informs me on what I was told and thought would be my second to last day (the 27th day in a row) of radiation treatments an hour from my home, that actually he had planned five more targeted sessions. He forgot to tell me!
This is the thing about being a cancer patient, people. EVERY interaction we have is frought with anxiety and second guessing about its true meaning. So this little gem of a moment, at what was to be the end of my craptastic year and then done of being a cancer patient, sent me into a tailspin of doubt, of suspicion that my situation was worse than anyone was telling me, etc. By the way, I am a well-read, fancy liberal arts education human. I know how to process information, to ask questions, to assert myself when necessary. Many, many of my compadres in cancer don’t have my arrogance, or confidence, or whatever. Even so, cancer levels us all into puddles of fear a lot of the time. Add to that cognitive difficulties as a result of chemotherapy (multiple regimens in my case) or say, whole brain radiation (had that too), and it is a gloppy stew needing constant adjustments to the burner temp, the seasoning, the balance of ingredients. Poor communication like the above only feed the fear beast. I know that’s not your intention in your commitment to caring for people.
Also, I had my overdue annual exam around this time. I have been seeing my PCP for probably fifteen years or so. And her assistant, an LPN, has been with her for her entire career in the area. So, they know me. We did the usual exam, nothing special about it. As I prepared to get dressed, the LPN told me to hang on a sec, she would go and schedule my mammogram and be right back. Huh? I tried to be calm as I said, “that really won’t be necessary, as I have no breasts.” Gosh, maybe just looking over my chart, even the last couple of entries, would have told you that. I’m not a super sensitive person who’s easily made to cry. If I were, and many people are with plenty of good reason, I would have right then. Let’s be real, losing your breasts is not an opportunity for a boob job. It is not a small thing, though breasts are not major life sustaining organs. It actually really sucks, for a lot of reasons, but I digress.
May 2014: As I said earlier, I felt a lump in my neck out of the blue one night, called Dr. Raish’s office blubbering, and was asked when I could get there. I said two hours and got in the car (yes, I live two hours from my beloved oncologist). We set up an ultrasound guided biopsy and I set about asking Dr. Google what else it could be. I was giddy with my own intelligence at that point – it was either an infected implant (praise be, I would have to have them out!), or an obscure autoimmune condition I found that seemed to fit the bill. Smugly, I went to my follow up for the biopsy results only to be…. Er…. Wrong. After scanning the other remaining pieces of my body, it was found all over the place.
Fall of 2014: This season was chock full of medical moments with insurance authorizers, schedulers, and the like. The upshot is that if you are one of the above, please know that “scanxiety” is real. It is not just a cute tag line that we live scan to scan. We do. So please, please, take the long road, do the harder, more complicated finagling of authorization gymnastics and scan scheduling. The easy, efficient way probably does not serve the patient best. Communicate with the different facilities involved, and if your giant medical facility has the front desk people and the techs in the back on different EHRs, fix that right now.
Spring 2015: I was just settling in to my life as it was. The targeted HER2 treatment Perjeta had had amazing results when paired with Herceptin, only it wasn’t available yet for neoadjuvant use when I had my initial diagnosis. Now, I had been NED (no evidence of disease), or as I like to say, NRED (no radiologic evidence of disease), since October, and the two infusions every three weeks, while tough on my insurance who was paying for them, were not too tough to live with. I started feeling a tiny bit off when doing flip turns at the pool. That’s all. And my eyes felt bleary from what I assumed was my two day per week job in front of a computer where, with my reading glasses on I had to be very close to the screen and with them off wheel practically out of the cubicle. In my former life I would have chalked it up to tired or hungry. In my occupation as cancer patient, I knew to request a brain MRI.
Yup, you guessed it. Brain tumors! 18 of them! Too poorly differentiated for gamma knife! Whole brain radiation it is!
I like the radiation oncologist to whom Dr. Raish referred me. He is smart, capable, has trained under bladebla who spoke on breast cancer brain mets at this summer’s ASCO meeting, and so on. We made a plan, it didn’t seem a second opinion was going to net me any different options, and I was able to lie down for the mapping and planning stuff the same day. I asked him when I would lose my hair. I’ve lost it twice before on treatment. I just wanted to know. Planning and knowing is not the worst or most trivial thing to want. He replied that that was the “least of” my “worries.” Hey mister, it’s not for you to say what I should worry about and how deeply. I am not a complete idiot. I know it’s incidental. Give me the dignity of just answering my questions.
Now, the apex, the pinnacle, the climax of medical moments, if you will. The medical moment that caused me to start generating my short list of such moments. This one was posted as its own tirade after getting home from the appointment. But it belongs here, so feel free to skip!
June 2015: Thursday is “doctor day” at the two radiation centers I have gone to – more baby-fying, infantilizing terminology if you ask me, but that’s another entire talk. Children do get cancer, I am not happy to say, but all people with cancer do not suddenly become children, or childlike.
My doctor was gone so another doctor in the practice saw me. My doctor and I talked last week about next plans and all the detritus to come so I wouldn’t be left hanging with him not there. So. The other rads onc came into the room. I had one question and only one, concerning a drug side effect – nausea. As is the case these days, doctors, nurses, medical assistants, and receptionists spend a lot of human interaction time looking stuff up on the computer and charting as they go. I get it. It is what it is. I like EMRs, and have no desire to return to paper charts.
This doctor proceeds to tell me that my nausea could easily be caused by the metastases in my liver.
Me: Dr. Raish did not mention any metastases in my liver. (Me, feeling like no way did Dr. Raish sugar coat my situation for me. And if he did – betrayer! But, he wouldn’t!)
Her: It says here in your May scan report that there are multiple hepatic lesions, suspicious for metastases.
Me: Could I see that? I have not received a copy of that report yet. (Cue – stand up and read the screen over her shoulder.)
Me: Um. The date of this scan is May of 2014.
Her: Yes, nausea can be caused by metastases in the liver.
Me, in a thought balloon: WHAT THE BLANKING BLANK? Did you not just hear me? You are reading the report from my diagnosis of recurrence a blanking year ago! My records should certainly reflect that I have been NED, at least from the blanking neck down, since last October. BLANK!
Me: My understanding is that I do not have radiologic evidence of liver mets at this time.
Me, in a thought balloon: Jon, let’s get the blank out of here.
Her: So you will probably lose your hair very soon. Have you noticed hair on your pillow?
Me: No. And I have gone bald two other times from cancer treatment so this is not an issue I really need to discuss.
Her: Do you have any other questions for me today?
Me: No. We’ll just get on the road and head home.
Me, in my precious thought balloon: Like I said, let’s get the blanking blank out of here.
This is me, the gnarled cancer veteran. A couple of years ago I would have burst into tears and believed her. And stressing out my nice, nice husband, that is pretty unforgiveable.
The reason I’m telling you all of this is not to complain. I do a lot of yoga, I feel centered and calm a lot of the time (given my circumstances), and I can see just how difficult it is to work in health care in the 21st century. Time and familiarity are now luxuries.
If you work in health care, I’m telling you this in the hope that you will stop, breathe, and consider how your interaction might be interpreted by a cancer patient. I do not want to silence you, or make you afraid you may not ever say anything right. We all need to slow down a little, review a chart before walking into an examination room containing a stranger or someone you think you know well. We are all humans, and there is nothing easy about interacting with each other. Say that. Do you have any idea what a relief it would be to hear an “I’m so sorry, this has to suck really badly. We’re going to make the best decisions we can make together from the best data and your personal preferences to give you the best life you can have.”
If you are a patient, of any kind, A. keep it together and get to the root of what you want to know. Or, B. burst into tears if someone has scared you or been insensitive. Both are appropriate responses to stress. If you choose B., make sure to go back to A. Persist. Pick your battles. The tirade I emailed to my medical oncology office netted vastly improved service regarding authorizations, updating me on delays, and scheduling procedures and scans. I can’t say as I’ll complain about the stand-in radiation oncologist, as I will have absolutely no ongoing relationship with her. The reason to bring it up though, which tempts me always, is to change something that is being done badly, for all of us. I am hoping that my medical oncology office is giving better service in this area to everyone, not just “the lady who won’t stop calling all the time.” Seriously, someone there actually once said to me, “well, if you would stop calling so much….” As Amy Poehler and Seth Meyer like to say, REALLY?