I stood my ground all the way with the old bastard. Toe to toe. But I have to say that it was brutal; physically, mentally, emotionally. Just being in that toxic atmosphere with all those misused women was brutal.
I am curled up in my chair with my second cup of coffee. Enjoy it now. Tomorrow at this time I will be fasting in preparation for a PET scan at 12:45pm.
Yesterday. What a wild day. It's a good thing that I booked it as a pure medical day. It was a pure medical day. A fuck up, solved a fuck up, go forward, and go back a step in time, to another era, day. A taste of my mother's cancer moment. A taste of what her world was like. And some results, but still not the results.
It was the same kind of stuff that's been happening in slow motion all along, but it was all speeded up yesterday. And I had two big family conversations too. So it was all of the medical things that I've been doing more or less all along in small doses crunched up into one big super medical day.
The plan was sensible. The appointment was at 10:30, for the blood test, and the new doctor, my oncologist was scheduled for 11:30. They tried to arrange it so that Dr. B joined us then and I could do it all in one appointment with two doctors. Consideration for my time by the scheduling ladies. My husband came with me for the first time because this was supposed to be the doctor-explaining-results-of-the tests meeting. That formal sit down, you have cancer and this is what it means meeting, and a chance to ask our questions. There was supposed to be some kind prognosis, and treatment plan. Which we all knew was not going to happen yesterday because they still hadn't even done the biopsy, much less had lab results from it.
And nothing can happen without a biopsy and lab results. I made up my mind on that account. Absolutely no treatment without clear information. Tests. Fine. I'll do tests up the yin yang (literally) as necessary. But no treatment without the test results.
Still, and this is how easily it happens - I did end up letting them book me for chemo starting on Oct 15. "We can always cancel." It takes a long time to get in, better to book and now, and cancel if necessary, rather than have to wait another month after we get the results.
It was pure nightmare just to find parking. This is why I usually take the bus or get dropped off. We drove around and around the neighbourhood and every single spot on the street was taken. Even my husband who believes that using a paid parking lot is 'unsporting' finally gave up and we headed for the underground parking. He commented on how terrible it would be to live around there, imagine living with that parking situation all the time.
And then even in the paid parking lot it was full. We went down and down, six floors down below ground. People were double parked in the parking lot! There were attendants at every level guiding you, directing traffic. Wow. They directed you to park right behind another car. What? Then they took your keys so they could move your car if that other guy came back and needed to get out. Sheesh.
That was the worst parking scenario ever. Worse than any sports or concert event I've ever been to. Did I mention that my husband doesn't like resorting to paid parking lots in the first place? We were on floor S6. I wrote notes for everything, the floor, the A,B,C,D and the parking stall number. I was afraid that if it was 'freak out' news then our brains would be fried as we were coming out and then we'd have another nightmare trying to find the car in all that mess on top of freak out bad cancer news.
We found an elevator. It was a tiny padded elevator that took us into a construction zone and then a winding maze. That is how you get into the hospital from the parking lot. It was not a fabulous introduction to this hospital for my poor husband. I had imagined introducing him to this hospital that I like for the first time. I imagined making a point of bringing him into the nice main entrance, and then going the long way, along the atrium hallway with all the windows and medical history displays. Not. It was definitely not that gracious introduction.
And then we were in the general maze of the hospital. The general hustle and bustle of people going this way and that way, looking for our pavilion and the elevator to the our floor as many stories up as the parking lot was down. Whenever we stopped and looked stunned, and it was frequently because I didn't know the way from this direction, some nice hospital worker would stop too, and ask if they could help. They all did that; doctors, nurses, cleaning staff, whoever was out in the hallways. That part was nice. So I think the hospital did make a good first impression on my husband anyway even with the crazy parking situation.
And he was definitely impressed with the cancer floor. The comfortable waiting room chairs, and the little stands with ipad like things that connected to the internet so you could sit and surf the net or check your emails while you waited. And they let everybody use their cell phones, ipads and other devices too. Much more civilized that your usual hospital meat-wagon-line-up where you took a number, like say 219 and then waited on a folding chair for your turn. No using cell phones, wifi or devices.
There was an elder gentleman, he dropped a five dollar bill and my husband said, "excuse me sir, you dropped a five dollar bill, oh, I guess not." It was on a string. The older gentleman sat down beside my husband and had a chat while I signed in. The elderly gentleman showed up again in the blood test area with a nail through his head trick. Again, my husband noticed, but no one else did. This is why you bring that second set of eyes. Well not precisely to see the magic tricks, it's not really necessary to notice an old guy doing magic tricks, but it is good to have another set of eyes with you - seeing the things that you miss.
It was another good blood test. That guy got two vials on one prick - no problem. They see the bruises on my arms from previous tests and do try to get it right for me. Plus that's all he does all day. Take the labels that you give him, ask your name to make sure you've got the right ones, draw blood, put those labels on the two vials. Yell out "next" and do the next person. All day long. He doesn't even get to stand up. He just sits there and draws blood. No wonder he's good. He smiled and looked pleased when I told him, “you're good!" Small moments. He's a kind of assembly worker.
Then we waited. All around us people came, and went, the crowd built up and disappeared. It was a big excitement when they called me, and then a let down when it was only to be weighed and have my height measured. I laughed, it was exactly like the weigh scale at the vet's where Moose used to have to get weighed before every appointment. He learned to walk in the door and go directly to stand on the weigh scale and wait for his treat. I joked with the volunteer attendant about how we are all getting shorter and fatter as we age, spreading out. I prefer to think of myself as five three and a half, but it's okay if he calls it five three for the official record.
And we waited. The chairs were comfortable. It was nice sitting with my husband. He read his book. I knit. We waited another hour. I joked that it was like sitting in the airport waiting for a flight. I fully expected that at the end of this wait we'd get on a plane and go off on a holiday together.
At the end of the wait Dr. P came to collect me in person. The idea was that I would go in alone for the physical exam and then my husband would join me for the ‘talk’. Dr. P is a kid who is nervous being alone with an actual patient. He's a resident and he's big into talking about all the possible test/trials that I could take part in when they finally diagnose my cancer. He was so nervous I felt like I had to take the pressure off him. I almost fell getting onto the examining table when the stool slipped and I said, 'That'll change everything. If I fall off the table and break my neck, the whole treatment plan will go out the window', and he laughed. I am turning into my brother after all. Entertaining the troops.
This is the info that I got out of my brand new oncologist, young doctor, resident.
My heart is good, and that's actually a bit of a relief, and that means those chest pain moments must've been some kind of acid reflux, heart burn thing, and not a real heart problem. Good to know that. Generally that is a good thing to know.
My CT scan shows some kind of little bone thing on my right hip. I will need a bone scan. He was surprised when I told him that a bone scan was already scheduled.
My CT scan show an enlarged lymph node in my chest. That could be a problem. They are going to do a PET scan. Actually he didn't even know if it was going to be a problem, I had to ask him. Is an enlarged lymph node in my chest a problem? Young Dr P had to leave the examining room to ask some more all knowing being down the hallway and then come back and tell me that yes it could be a problem and they would do a PET scan, and then a biopsy. In the middle of my chest? How do they get in there? He explained that that type of biopsy is difficult to do and painful. I thought of lung cancer lady and her warnings about really bad tests that make you suffer. I said I only would agree to something like that if the easy biopsy showed cancer. He had to go out of the room to learn how to respond to my refusal to sign off on the deep chest biopsy. He came back and said it was okay, the PET scan would tell them what they needed to know. And then he went on a bit more and quite specifically about how difficult that chest biopsy would have been and how it depends a lot on the skill of the technician, both how much you have to suffer as the patient, and how useful it is to the doctor.
So, the CT scan did not clear me. I am not in the clear. But it's not really scary either. It's not showing right away that there's a cancer that's spread throughout my body to lot's of distant organs. Bones and lymph nodes, I don't think of them as 'organs'. But I don't know what those results mean. It was hard to get a sense of perspective from the kid who was so caught up in all these specific details that may or may not have anything to do with me, and completely lost on general big picture questions, like, 'has it spread' that you'd think he would have prepared for that really obvious patient question, that he should have been able to answer without having to leave the examining room to get a second opinion on what to tell me.
No one told me about that chest bone thing, I looked it up when I got home. I guess lot's of people have it, but that shadow on the CT scan is what initiated the original bone scan appointment, an enlarged lymph node behind the bumpy chest bone. I just hope this hip one doesn't turn into a bone biopsy. More about that later. Biopsy.
We were in the middle of having this conversation me in my hospital gown and young Dr. P in his expensive suit with the tight pants when Dr B. burst into the examining room. He was mad! His red-haired Irish-looking face was flushed, "I can't do anything without a biopsy, I can't do anything without the results." He thrust a scrap of paper into my hand, "Here, take this up stairs, show it to this person, her name is right there if any one gives you a problem. Get it done. Today!" I told him that I'd called his nurse and told her there was a problem and he calmed down, a bit, "Yes, I know, that was good, you did good, you keep doing that whenever you notice something like this. You call, you say something. Keep doing it." And boom he was gone and out the door again. He never even looked at young Dr P. Not even a glance.
So we are on the same page as to the priorities. I did not have to waste my energy psyching myself up to confront him about doing things without biopsy results. And I was impressed that he got it, stepped up and dealt with it so vigorously. That is the kind of doctor that you want to have in your corner when you are in a fight to the death - with death.
By then I knew the procedure for making appointments. You take your piece of paper to the scheduling ladies. Even if you have to stand in line again do not go directly to the places written on the paper. Those ladies are like mission control. They know everything and they know everybody. You go there first. You see those ladies and you let them know what's going on. And they take your pieces of paper and turn them into whatever is required to make whatever the doctors ask for happen as efficiently as humanly possible. They called upstairs and told them that I was on my way. They said when I was done the biopsy, the fastest thing was to just go downstairs and book the PET scan myself, they called them too, and said I would be on my way shortly. And then boom, my husband I were suddenly on a new mission. All that waiting had turned into hurry up. Because now it was 2:00 and the testing departments all closed at 4:00pm.
I think this fantasy of sitting, fully dressed across a desk from a wise, kind doctor who explains everything clearly, and answers all my questions with the exact right amount of information is done. Even the lesser fantasy of bringing my husband into the room and being prepared to have that important meeting in a hospital gown in an examining room with each of us taking turns asking questions didn't pan out.
It's all happening on the fly.
My poor husband was confused as to why he was being dragged around this maze of a hospital, and where the heck we were going, and even where the heck we were. He kept trying to get me to book the PET scan first. I said, "No, this is the priority, forget the PET scan appointment, the biopsy is key to everything, the biopsy has been the problem - we do that first. Dr B said, do it today, the magic mission control ladies said, 'go there first'. My husband was sure that we'd end up waiting again, sitting there all day, and not getting in, and then have to come back the next day.
This time there were two other women in that giant empty waiting room, but I got called from the waiting room within ten minutes of arriving and checking in. The call from the scheduling ladies changed everything. My husband was impressed. We'd barely got settled with our books and knitting. The woman who showed me the lockers where I had to undress seemed to have her shit together and told me right away that this was for the ultra sound, that they would try to do the biopsy today, but if not, it might be tomorrow or the next day. And so then the next thing I knew I was having an ultrasound. Nobody told said anything about an ultrasound.
The ultrasound technician was a kind middle-aged woman, in her prime. She did a pretty thorough job. I got to lie there and look at my mammogram images on the screen. She'd seen them already, the radiologist had also seen them already. It was good that I called Dr B's nurse and she alerted them to at least look at the images. They were prepared enough to wheel me in and start working on me as soon as Dr B threw a fit and raised hell. I guess he called up and it was all set before I even got there. We were a good team on that.
The growth often seemed to have acquired a life of its own, as if the cells had come possessed by a new and mysterious drive to grow. This was not just ordinary growth but growth refined, growth in a new form.
Siddhartha Mukherjee, The Emperor of All Maladies, 2010
I watched my cancer on the ultrasound screen as she worked. It was not how I imagined it would look. It was like an pale alien spaceship floating in the dark void of the rest of my breast tissue. Calcifications. Castles in the air. It was completely different from everything around it. I could see that right away, I didn't need to hear her intake of breath to know that this was an alien living within me. Not a baby, but some other being; alive within me but not me, had taken up residence in my body. And here is the thing that took my breath away too. It was strangely beautiful. Not ugly and misshapen, not a troll, not a crab, but this strangely beautiful alien, castles in the air creation. The technician and I did both have this odd, shared moment of awe at the sight of it floating there on the screen. Erie, and strangely beautiful. Cancer.
In the folklore of science, there is the often-told story of the moment of discovery: the quickening of the pulse, the spectral luminosity of ordinary facts, the overheated, standstill second when observations crystallize and fall together into patterns, like pieces of a kaleidoscope. The apple drops from the tree. The man jumps from a bathtub; the slippery equation balances itself.
Siddhartha Mukherjee, The Emperor of All Maladies, 2010
And then, the next thing I knew the radiologist came in, ready to conduct the biopsy. I had become the priority. They fit me in, just like that. It was happening. That minute. No time to waste. No time to think.
It wants to live too, in its way, understand?
Alexander Solzhenitsyn, Cancer Ward,1966
And right away I could see the cause of the biopsy scheduling issues and why this one test, this one part of the whole process had not gone as well as all the other tests even though this was the critical one. It was standing right in front of me. The problem. What we had was an old white guy, leader of a harem of young women, looking at boobs all day long, working with boobs all day long. No one to stand up to him. No one to contradict him. Absolute authority in his little empire of women. Whatever humanity he might have had was completely submerged in this arrogant bull in a harem of women. It wasn't only his staff. All his patients were women and it was all about boobs on top of that. He was a bully. He was a bully to his staff and they were all afraid of him, I could feel it as soon as he walked into the room. I could feel it in the way the ultrasound technician stiffened beside me. I could see it in their body language as the assistants came in behind him.
The first thing he did was make sly, critical, insulting bully remarks to that very capable woman who did my ultra sound. I hated him for that on her behalf. The rest of the women hoped they wouldn't attract his attention. They didn't want to be next, his next victim. That was their posture. The only woman with strong body language in the room with me was the locker room woman who first took me in to get changed and whispered the instructions at me. Perhaps she was the one who was named on Dr. B's piece of paper. In case of trouble, demand to see her.
Then he turned his attention to me. And he was not happy about the way I had disrupted his schedule, messed with his absolute control. He made sleazy insulting, arrogant, sexual innuendo jokes to me, not even to me - at me - performing for the other women who were in the room to assist.
There were three or four of them. One women in complete civvies. I don't know who she was. She seemed to be some kind of observer. The rest had roles that became obvious as we went. Standing by, taking things when he gave them to him, handing things to him when he asked.
They started doing the biopsy without any of the usual consent paper work, or the presentation of risks. He just asked me if I agreed to do it, verbally in front of the team. I said yes. And then he said, 'Well a women should never just say yes like that when they don't even know what they've agreed to, that's how you end up with a whole passel of kids, isn't that right?' and he put it to the women around him, professional adult women with husbands, and children, and careers in medicine, not to a group of ten year old boys giggling about sex and boobs. But that was his language. 'Imagine a woman agreeing to sex without knowing what it was, but that's what women are like, stupid that way, just agree to anything. And then they wonder why they get pregnant.' Those were the first words out of his mouth.
I was flat on my back, boobs out and exposed, strapped or held down, I couldn't really look around from there and see everything around me.
I still gave as good as I got. I matched him insult for insult, joke for joke. I turned it around. Every bit of wit I ever had, I used it. Hard as I could. Sharp as I could. I did it for those women. I didn't care about me, I'd be done and out of that place forever, before supper. But I could not let him get away with one single sexist slur unchallenged, not in front of those poor women had to go into that hospital and work for that childish bastard every single day of their career, especially the nice ultrasound technician. His treatment of her got my back up, but all of them were stuck with his constant verbal abuse, all of them were better than that, deserved better than that. It was a battle royale. A battle of wits. And I was winning. They were standing up straighter, they started to smile to themselves. They started to glance at each other out of the corners of their eyes. And then they actually started to smirk at each other whenever I delivered an especially good strike. They even started to talk themselves, not so afraid of attracting his attention.
I impressed them so much, and changed the tone of the room so much that one of the women asked me what I did for a living. They all wanted to know. I said I was a writer. He said, "A writer, eh" and I could hear that he was speaking from that era when women were not considered capable of writing anything 'worthy' and he looked around with a face that said, let's all laugh together about her pretensions to be a writer, still playing to that imaginary crowd of immature males from a bygone era. Then that stupid doctor did say something about hoping that I wasn't going to write about my terrible experiences getting a biopsy. Ha, ha. The penny dropped. It dawned on him that I might actually write about my terrible experiences getting a biopsy. He heard himself say it. And that was the end of his running stream of crude, lewd jokes. Finally. The room got quiet. And he lost a bit of his arrogance.
It does no harm to have a streak of stubbornness, and a loud voice as well.
Rose Kushner, Breast Cancer, 1975
At the end of it all the original helpful woman took me back to the lockers so I could get dressed and said I'd been a good patient. She thanked me for being a good patient.
The biopsy itself. He didn't get a tissue sample on the first shot. It took him five shots. He started to get frustrated and impatient, and he didn't freeze my boob properly, or wait long enough, and each one hurt like hell. And it sounded bad, like a staple gun, or nail gun, and he just kept shooting, and complaining that it was hard, whatever he hit was too hard, you can all see that, no good tissue there either, not his fault. It was five shots before he finally got two tissue samples that they thought were good. It was awful. And he asked me every time I gasped, 'did that hurt?'. I said, 'Yes, it hurt.' After he finished with my breast he did a lymph node biopsy. In my armpit. He did freeze that one properly, the gun thing was smaller too, he again asked me if it hurt - hoping to show the team that I was just a whiner, that was in his voice, see I was doing it right all along, she's just a whiner. But I said, 'no, that one did not hurt at all.'
I stood my ground all the way with the old bastard. Toe to toe. But I have to say that it was brutal; physically, mentally, emotionally. Just being in that toxic atmosphere with all those misused women was brutal.
And it did not end well. I guess there was blood everywhere. He looked at down at me lying on the table and sneered. He said, 'It's disgusting. Somebody clean that thing up." And he walked out of the room.
One of the women took me for a mammogram after they cleaned me up. She explained that it was a light mammogram it just records where he'd put in the metal marker to show the place where he took the biopsy from. The two of us had a nice moment when I signed the consent form after the fact, and she saw my name on the form and said, 'Hi Janice, I'm so and so, nice to meet you." After the whole biopsy zoo and wiping down my poor boob and doing the mammogram on it afterwards. After I was upright and all dressed again, then it was Hi, I'm a person, you're a person. Nice to meet you. And I forgot her name.
I looked at my phone and learned the scheduler had been calling to find out why I hadn't done the PET scan appointment yet. And had even called my husband whose number is on the list as my emergency contact to find out where I was and so it was a race for the two of us to get all the way downstairs before those folks left for the day. The PET scan place turned out to the exact same place as the heart scan. Not so hard to find after all. I got to go in there, talk to that same nice lady and make jokes about how I'd had such a good time there yesterday that I decided to come back again to see what else they had to offer. Some new doctor came to sign off on my form. It was protocol, he had to sign but I wouldn't let him have the form, I actually fought him for it. I only give my precious papers to the schedulers, doctors lose them and it's hard to get a new one. The scheduler apologized for not telling me that he'd be coming along to grab the form and told me I had to let him have it, it was okay. She gave me permission to hand over the form to the doctor. We all had a laugh even the poor, nice doctor.
And then it was me and my husband coming home. Me in pain the whole way. I should've brought Tylenols with me. If I had know I would've brought them. And you know, I think maybe I should just keep a bottle in my purse all the time now. Just in case. For all these hospital tests. You never know. It was a bouncy painful ride home.
My husband said we have to tell people in the office. He'd missed a meeting while waiting for me, he needed to have a reason, so I gave him the okay to start telling people. We told them that they think I have a cancer and they're doing lot's of tests and that's why I'm away a lot and distracted even when I'm not away. We'll know more in a couple of weeks. One way or the other.
And so began the second stage of my super medical day. Telling people. We're into another layer of telling people. Everyone in the film office knows now.
I listened to my book for a while. I had a bowl of borsht, comfort food, and I waited for my phone to charge. And for the Tylenol to kick in. Then I called my sister and finally told her. She was okay with it. We talked for a while. She asked all sorts of technical questions. She told me about all the people she knew who had biopsies and it turned out to be nothing.
I talked to my son, they were waiting for my call, waiting to hear the results. I was really honest with him, was just flat out honest about what's going on, what happened today, and what I think about it all. We decided to go ahead with the trip there seems to be this pause in the tests and treatment wouldn't start until Oct 15 at the earliest. I'd like to see them, I'm fine now, but that it might be harder later on, I want to take advantage of the chance to see them now. I'm looking forward to an umbrella drink and a hot tub when I get there on Friday night. They are looking forward to seeing me too.
My poor husband. I forget that my boobs are an important part of his life too. I forget that he hasn’t had all that long time of worry to get used to the idea of getting rid of a killer boob if necessary. I didn't pass on any details about the biopsy process, but he still cared about the pain I was in, he empathized with my feeling of being physically abused in a tender area. He's had testicular cancer. He knows. And he asked to see what they'd done to me. I showed him, but I didn't want to look at 'that disgusting thing' myself. My husband said it looked like bullet holes. He hugged me gently on other side. He is worried about surgery. He asked about surgery. I told him that they do less of that these days, that they do the chemo first, reduce the tumour and then do less surgery, less destructive surgery - except in the case of the genetic aggressive cancer when they might even remove the other breast too, even if it's not showing cancer. That's the one you need the genes for and that's the one that I don't seem to have. But we don't know until we know.
We watched TV. We went to bed early. I slept surprisingly well after all that. Woke up at five am.
Today is a non-medical day. The sun is up and shining. My journal is taking longer and longer each morning. And I have less and less time now that part of my schedule is given over to medical stuff. But it feels good work my brain through all these new experiences.
It feels good to pat myself on the back. I hate this medical shit. I avoid it as much as I can. I have lived my whole life avoiding it as much as I can. That was the whole reason for my exercise regime, healthy eating, mediation, all of it. Avoid medical shit.
Some people do the health thing to avoid death, I’ve been doing it to avoid medical shit. But I am being a good girl and handling pretty it well now that I'm in it. Stepping up and doing it no matter what. And I'm patting myself on the back over that. Good girl. Good patient.
Today I've got a few things on my schedule. Laundry for one. And one film script meeting for sure. And I think I will even sit in on another meeting too. Keep up with what's going on with those two projects. Distract myself. Of course all this happens when I have three jobs on the go, and pre-booked visit to the kids and grandkids in Baltimore. Of course. That is what life is like. Life is like that
I look forward to being bored one day.
Dispatched: Sept 19