There is no place quite as “inside” as inside a cancer hospital. Quiet, orderly, pastel. Everyone is subdued. Everyone waits. No one talks much. We’re all just waiting. If you are in the hospital, you or a loved one has cancer. Or you had cancer and are back to make sure you don’t have it again.
This does not make for lively conversation. I always bring a camera with me so that while I wait, wait, and wait some more I can take pictures.
Those of you who suffer from serious medical problems that don’t go away and can kill you, know what I mean. Regular checkups are high stress events until you (hopefully) get the word that all is well.
Even though you have no immediate evidence that anything is wrong above and beyond the “usual” which is something like a Chinese menu of interrelated ailments and conditions, you always harbor a not-so-secret belief that something ugly is going on and you just haven’t found it … or it hasn’t yet announced its presence.
There are people — Woody Allen leaps to mind — who feel this way through most of their lives with no evidence that anything is wrong. The good part of this approach is when something ugly actually does show up, they can say “See? I told you! I KNEW it!”
Pessimism saves you from a lot of disappointment. It also keeps you from enjoying the good stuff that happens along the way. I guess for the hard-core pessimists, it’s a small price to pay. Fear of fear, fear of bad news, fear of being too happy then being let down? I can almost (but not really) understand.
Days like this always starts at the lab. This is the scene of my first battle of the day, as I try to convince them to treat my one working vein with gentleness and subtlety. Do not attack it with a spear. Cajole it with a tiny pediatric butterfly needle because if you blow it, finding another live one will consume half the staff of the labs of two hospitals. They got blood, but it took two nurses and a lot of jiggling that needle around to find the magic spot.
“You think maybe it’s deeper?”
“Let’s try going deeper.”
“Hey,, I think I see a flash … ”
“Grab it before it rolls”
I frequently slice pieces of my fingers off while preparing food. I bleed like mad — blood on counters, floor — blood everywhere. I suggested to the nurses that next time, I bring a kitchen knife and slash myself, like I do at home. There’d be more than enough blood and it would be quicker than all this probing with needles. For some reason, they didn’t think it was such a good idea, but I thought it was brilliant.
I had brought the little Canon Powershot S100, my Kindle, and more importantly, Garry. They are my defense against losing my mind. This is how I avoid excessive cranial activity, i.e., thinking. Usually I’m in favor of thinking, but under this particular circumstance, nothing good can come of it.
As you can see, I shot a few pictures, some of which turned out rather interestingly.
Blood having been taken, it was time for the long wait for the CT scan. I was originally supposed to drink some kind of dye solution, but I can’t because I have no stomach and I’m not up for massive nausea today. I’ve gotten to the point where they say you have to do “this” and I say “No, I don’t.” We go back and forth and eventually, they acknowledge that no, I actually don’t have to do it. But they really wish I would.
They were determined to get dye into me one way or the other. After taking a look at my so-called veins, the CT tech sent me to the chemo people who presumably can put an IV into a turnip. The lab had already mutilated my good vein, so it was now a retired vein. Even using the newest, grooviest high-tech equipment, they couldn’t find a live vein. An electronic vein finder is totally cool. It looks like a flashlight, but when they point it at you, you can see all your veins like a blue network under your skin.
If you want to distract me from pain and misery, give me a high-tech toy to play with. I’m like a kid at Christmas. So they let me point the light and together we hunted the elusive usable vein.
High tech tools notwithstanding, my veins defeated the chemotherapy staff. No small achievement. After a full hour and three nurses poking holes wherever they thought a vein big enough to take an infusion might be hiding, they gave up.
The CT scan was performed sans dye.
Then, off to the oncologist. He looked sympathetic. He always looks sympathetic. Only psychiatrists and oncologists ever perfect that look of total sympathy. I often suspect it covers a deep ennui. Best not look too closely.
Mine also looks sad, perhaps slightly troubled, but deeply sympathetic. Oncologists are always very nice.They speak softly, gently, kindly, not wishing to upset you since they figure (true) that you are upset anyhow. He looks at my labs, tells me everything is absolutely normal. (Yay!)
He looks at the CT scan, which was a big one, chest to hips. He says nothing is there that shouldn’t be. Lungs clear, everything clear. Except my spine. Which even Garry and I can see is so encased in arthritis it doesn’t look like a human spine. No wonder it hurts.
The dogs weren’t finished at the groomer when we arrived at home, so we had to make a separate trip to get them. Worth it. They look so much better and incredibly cute. More importantly, they smell better. They had gotten seriously stinky.
Eventually, I get my reward: a big family dinner featuring a roast leg of lamb. This doesn’t happen very often. Even when we weren’t quite so poor, it was a rare event, but these days? It’s an “almost never” event.
We, the couple who traveled the world and hung out with stars mostly now hang out with doctors and sit, waiting in sterile rooms. What’s wrong with this picture?
A visit to one’s oncologist … the routine kind of visit when you haven’t got any deeply disturbing new symptoms and your best hope is that nobody finds anything the least bit interesting and you get to go home with all the same pieces you had on arrival. A visit after which no one calls to say you need to come back for more tests. The “normal” visits everyone who survives cancer hates, but figure as long as they stay boring, that’s good. “Survivor” as we all know, means “not dead yet,” and that’s the way we want it to remain. Whatever else is wrong with us, as long as the bottom line is “I’m alive!!” we are happy campers, or as close to happy as you can be when one of your primary doctors is an oncologist.
Yesterday was a deferred, re-scheduled quarterly visit.
And wouldn’t you know it, I forgot to stuff my Kindle into my bag. The lab took forever and the only tech they have who can find my good vein was off. I have only one usable vein. If you miss it, good luck finding another that will yield enough blood to run the tests.
The day had gotten off to a roaring start, as it so often does, because we got stuck behind one of the areas super slow drivers. Being as our roads are one lane in each direction, stuck is stuck. Naturally, whoever they were, they were going exactly where we were going … the Milford Medical complex — Milford Hospital and our local Dana Farber outpost. We tried not to start honking the horn or acting crazy.
It happens every time we have to go somewhere and need to be there at a particular time. I’m not sure how they know we’re coming, but that 25 mph driver is waiting and will always be immediately in front of us as we try to get wherever we are going, almost always a doctor or hospital. Oddly, we never have any trouble getting home quickly … when we aren’t on a schedule.
We got there more or less on time anyhow, but the lab took a long time. She needed to keep hunting for that vein. She finally found it and I tried not to act as surly as I felt. Probably I failed. I was surly. They never listen to me. You’d think, having been the owner/operator of this body for 65 long, painful years, they’d figure I might know a thing or two about it, but they always assume I’m either senile or retarded. Maybe both.
We had to wait for the lab. We had to wait for the doctor. Then, we had to wait some more because I needed a chest X-ray and the X-ray tech was in the other building (the hospital across the street) and when he showed up, the software that runs the X-ray machine was on the fritz. I suggested he reboot. He said the last time he did that, it totally died. I pointed out he had nothing to lose: it wasn’t working anyhow.
He rebooted. It died completely. Another tech joined him and they concluded that the machine was (again because this is apparently a regular event) broken. I could have told them that. The reason that there happened to be a second tech right on the spot was because my patient husband, who was sitting there reading his newspaper had realized that his paper was getting wet. That it was raining outside was one issue, but we were in the lobby of the relatively new Dana Farber almost-but-not-quite state-of-the-art cancer facility. Less than 5 years old, anyhow.
So they called the guy to fix the leak (again) because this too was a regular event. They had yet to figure out where the water was coming from. They thought maybe it was coming through the electrical system and leaking out through a lightbulb, leading me to suggest that they could put a lot of people out of their misery by upping the voltage and electrocuting people in the waiting room. The administrative nurse says “Nah, we’d need an electrical upgrade to get the voltage high enough to do anyone in, but maybe they could fix it on the next remodel.” I love nurses.
I had nothing to do through most of this. Lacking my Kindle, I dug around and found my little Canon Powershot 260, which I carry all the time to handle photographic emergencies. After exploring the contents of the chip, deleting some really bad pictures, I figured I might as well try to see if there’s anything to photograph in the various waiting areas of Dana Farber Cancer Treatment Center in Milford, Massachusetts. That’s what happens when you forget to bring something to read.
Why they have a grand piano in the lobby is anybody’s guess. I’m afraid to ask.
“Well, in our country,” said Alice, still panting a little, “you’d generally get to somewhere else — if you run very fast for a long time, as we’ve been doing.”
“A slow sort of country!” said the Queen. “Now, here, you see, it takes all the running you can do, to keep in the same place. If you want to get somewhere else, you must run at least twice as fast as that!”
I know I’m retired, but where is my spare time? How did I ever find time to work?
Today marks the 2nd anniversary of my double mastectomy. Like someone falling from atop a very tall building who hasn’t yet hit the ground, I say “So far, so good.” Supposedly, if you survive for five years, you are reasonably likely to survive for five more. That makes me 40% of the way towards being half-way likely to have a normal lifespan. Unless something else gets me. Just because you’ve had breast cancer doesn’t mean you aren’t going to get another kind of cancer or die of a heart attack. My first husband survived kidney cancer only to die of heart disease. Some people are just lucky.
I feel fine, or as fine as my advancing arthritis and other assorted ills allow. I also felt fine when I had cancer in both breasts, so feeling fine could easily mean that whatever is killing me, I don’t know about it. Yet. One of the reasons cancer is so dreaded is its lack of early warnings. By the time you have symptoms, it’s too late. I had a double mastectomy so I’m unlikely to get breast cancer again. I don’t have breasts. If I get something, it will be fought on a different battlefield, like my lungs, stomach or pancreas.
I come from a cancer-riddled branch of the family tree. My brother died of pancreatic cancer five years ago. He was younger than I am now. My mother, at my age, was on round three having already lost both breasts in previous bouts and in that final dance, the cancer had migrated to anywhere her lymphatic system could carry mutated cells. A few years later, she was gone. I look in the mirror; it’s eerie how much I look like her.
I don’t usually dwell on my odds of living to a ripe old age. It’s pointless. Statistics are based on a lot of people who aren’t you, don’t have your history. That’s why you’ll never get an oncologist to give you an answer to the question “What are my odds of beating this?” They don’t know. They can quote statistics, but they know better than anyone how meaningless statistics are.
Despite the dice being heavily loaded in favor of cancer winning the final round, cancer hospitals do virtually no screening for early detection. They won’t do anything unless you make so much noise you manage to overcome their protocol. ALL protocols are based on statistical formulae. Every hospital has its own protocol. Some perform a few routine tests, but many, including Dana-Farber, do not. Whatever the protocol in place for your institution, every oncologist based there will follow it with religious ferocity, regardless of how absurd it may be for you.
The day you are diagnosed with cancer, you enter a tunnel. You have no choice about where you’re going or how you will get there. You will just do what you are told until you are “in remission” or dead. Cancer patients aren’t people. We are “cases.” Maybe that’s how oncologists cope with their jobs. It can’t be easy. Regardless of your medical history, they will doggedly follow the protocol and will not deviate. At least not without one hell of a fight.
Dana-Farber is a fine institution, but they have a protocol that says screening is a waste of money, so you wait until you feel a lump or have symptoms indicating something is wrong. I passionately disagree with this approach. It’s stupid. Getting my doctor to deviate from it (which I did, but not easily) was ridiculously hard. I succeeded by becoming such a nuisance it was easier to give me what I wanted (a chest CT) than keep fighting. I have been sick a lot and know that passivity can be a death sentence. If you want to live, you have to step outside the natural tendency to assume that your doctor always knows best and recognize that you’ve lived in this body a long time and know it better than any doctor possibly could. That many doctors refuse to recognize that patients know what they are feeling and know when something is “off” is infuriating and dangerous. I’d like to say that they dismiss women more than men, but I don’t think that’s true anymore. It was, but now they treat everyone as if they are stupid. Equality has been achieved.
Call me crazy, but isn’t early detection the gold standard in cancer care? Without screening, how early are you going to detect anything? Just a question for you medical types out there.
In theory, I have a good chance of never getting this cancer again. It was caught while both tumors were small. Both were a type of cancer (but not the same type) that are slow-growing and not very aggressive. As far as anyone was able to test, there was no sign of it having spread anywhere and the surgeon, who is very good, left wide, clean margins. Margins are very important in cancer surgery. You get to learn all about this while being treated. But, as one cheery oncologist so aptly put it: “It just takes a single stray cell.” He smiled. This is what passes for a joke in the cancer business.
I heave a great sigh. I can’t pretend it doesn’t bother me. Of course it bothers me. I’m not stupid. My mother died of breast cancer and my brother of pancreatic. Both maternal grandparents died of cancer too. It doesn’t take a genius to recognize a pattern. Survivor means you aren’t dead yet. Like being an alcoholic, even if you’ve been on the wagon for decades, you aren’t cured … you’re just in remission.
Last March, just as I was about to turn 65, I went for my quarterly dose of terror. All went as expected and Garry and I were in the car on the way home when my cell phone rang. It was my oncologist.
“You have to come back.”
“We need to rerun your blood tests.” I hate blood tests. I have no veins.
“Can I come tomorrow? We’re half way home …”
“No, come now. Just turn around and come back.”
That is not what you want to hear from your oncologist. Just having an oncologist is bad enough, but hearing him say your blood test needs to be redone is stomach churning.
Back we went. Zip, zap, zing. Before I could say “Hey, wait a minute,” I was in the emergency room, on a gurney and in a room hooked up to intravenous drips and who-knows-what-else. I had no idea what was going on. As far as I could tell, I was fine. My blood test results disagreed with my assessment and had triggered the alarm to my medical team. It was March 8th, three days before my birthday. The last place on earth I wanted to be was in hospital with tubes everywhere.
If any of you have watched Woody Allen movies, you may recall that he’s always convinced he has a brain tumor but no one ever takes him seriously. I am the antithesis of Woody. I think I’m fine. Everyone else is getting hysterical. It turned out the doctors really were convinced I had a brain tumor even though I had no symptoms of a brain tumor, other than being a nut case, but that was not news. Physically, I felt better than usual. Any symptom I had was part of a known problem already being treated or was being ignored because it’s untreatable.
Cutting a long story short, I had very low blood sodium levels. So low that the medical team was surprised I wasn’t dizzy and falling over. Typically, very low blood sodium is a signal of a tumor, often a very big brain tumor. We had skipped over benign possibilities and gone directly to the scariest possible scenario. At least they were taking me seriously. That’s good, right? Thus began the hunt for my big tumor. I was imaged, probed, poked, and biopsied from top to bottom. I particularly enjoyed the one where I had to drink a lot of barium because believe it or not, it tasted better than the food I’d been getting and was significantly more filling.
Before I escaped, they had run every test they could think of and a few others, too. Nothing. Normal. Clear and clean. The good part of this experience was I got to know what few cancer patients ever know. As far as current medical technology could tell, I had no sign of a tumor anywhere in my body. I hated being in the hospital, but in the end, it was worth it just for the reassurance.
I was very firm about being released before my birthday. I’ve been in one or another hospital for two birthdays and two wedding anniversaries. I didn’t care to spend another milestone in a hospital bed.
I’d have been more sanguine if the food hadn’t been so awful. You would not believe the terrible things a hospital kitchen can do to an innocent chicken. Or worse, a piece of salmon.
When I was having my initial surgery at the Faulkner Hospital in Boston, the food was terrible (of course), but it sounded great. These days, instead of showing up on a pre-arranged schedule with something inedible, you can select something inedible from a beautifully designed and professionally worded menu. In some hospitals, you can call for room service and they’ll feed you any time you want, as long as it’s before the kitchen closes, usually around 6 or 7 in the evening.
My friend Cherrie was staying with me at the hospital. She is the definition of a good friend, the one who cancels her life and sleeps in a hard recliner in your room while you try to come to grips with having been surgically redesigned. This is a digression to my digression.
The menu of the day featured “honey-baked salmon.” I love salmon. Actually, I like most fish, but I particularly like salmon. How bad could it be, right?
Our dinners arrived. I don’t know what she had ordered, but it wasn’t the salmon. I picked up my knife and fork with every intention of cutting off a piece of fish. The salmon fought back. I worked a little harder. Maybe I was weak from surgery and drugs. Finally, I managed to separate a piece of salmon and after some effort, spear it with my fork. I put it in my mouth. It continued to fight, battling each attempt by my incisors to incise. It seemed to grow in my mouth. The more I chewed, the bigger the piece grew. Finally, I swallowed it.
“Cherrie,” I said, ” I can’t eat this.”
“It can’t be that bad,” she said.
“Oh yes it can,” I assured her.
She took a piece, put it in her mouth, attempted some chewing, and spit it out. “What did they do to this? Is this edible? Is this fish? Is this food?” We started to laugh and could not stop. The more we laughed, the funnier it was. The only problem was I was at the post-operative stage when laughing hurts. I was full of tubes, drains and stitches. Nonetheless, laughter felt good. Pain and all.
I could not answer her question. It looked like salmon. Right color and shape, but its appearance was a trick of the light, perhaps done with mirrors. It was really a building material, perhaps a salmon-shaped roofing tile. We stared at it for a while, then shared Cherrie’s dinner. Conclusion: Do not order fish in a hospital. Bring your own food or consider fasting.
End of digression: We now return to our show, already in progress
Probably half a million dollars worth of tests later (don’t knock Medicare; I’d be dead without it), the answer was “idiopathic something or other.” Idiopathic is medical terminology for clueless. I had test results but no discernible cause. Fortunately, they did have a solution despite lacking a diagnosis. I would forever have to limit my intake of “regular” fluids. No plain water, fruit juice, or soda. I can have two cups of coffee (or something else “normal”), but everything else I drink has to be full of electrolytes, in other words, a sports drink. Me and Powerade Zero are now close buddies.
Thus as of last March, I didn’t have cancer and after I started drinking sports drinks, I stopped having foot and leg cramps that had plagued me most of my life. My family doctor thinks I probably always had low sodium levels that were borderline or marginally deficient. When I was tested in March, I had been drinking more than usual because I was chronically slightly dehydrated and was trying (ironic, eh?) to drink more. It was odd being told I to limit my fluid intake. Unless it’s a sports drink. I can have as much of that as I want.
I began drinking electrolytic sports drinks exclusively, other than my morning coffee. You would have to kill me before I would give up morning coffee. It must be accomplishing something because I am not thirsty all the time. Previously, the more I drank, the thirstier I got … so apparently there was something wrong, but no one knows what. Maybe it’s one of those genetic anomalies that seem to run in my family. Fortunately, the solution was simple and I really have learned to be okay with, if not actually like, Powerade Zero. Who’d have thunk it, eh?
Now, it’s October. I have another oncologist appointment coming up right before Thanksgiving. I do not expect to hear anything exciting. In fact, I very much would prefer to limit all medically related excitement for the remainder of my life.
Two years. Life changed a lot, physically and mentally. I hate being told I’m brave and am annoyed by people who think that it’s a blessing to survive something I didn’t think I should have in the first place. I am anti-pink think and still trying to reconcile this body with someone I recognize as me. I often feel as if I have been stuffed, sausage-like, into a casing humorously referred to as my body. I have a lot of negative feelings about my body. My fake breasts and I are not on good terms. They feel like alien invaders. They look fine, but they aren’t me.
I don’t have any wisdom to offer anyone except for one thing: Get the best surgeon for whatever kind of cancer you’ve got, someone with a lot of experience and a superb reputation. Do not go to the most convenient hospital unless it is also the best hospital. That initial surgery is the most important one you’ll ever have and if it isn’t done right, you can’t call for a replay.
I survived because I wanted to live. The alternative was death and I wasn’t ready for that. Surviving — and whatever it is that motivates you — is a very individual and subjective. What helped me were my husband, my best friend, a sense of humor, and reading a lot of escapist fiction. Now, I blog. I take pictures. Photography has been my hobby since I was given my first real camera and I have always been a writer. Blogging gives me freedom to write whatever I want and. It’s nice finally not having a boss telling me what I’m allowed to say.
I will forever feel that today is my real birthday.
Autumn is back. My year has come full circle. Trees are gold and red.
I’m alive. Good enough. Whatever the future holds, I’ll deal with it when it gets here.