Sunday, February 28, 2010

Why Me? Why Not Me? Part Five

This is part five in Alison's saga with bladder cancer treatment. You can find the earlier installments if you search for Alison or Why Me? Why Not Me?

One More to Go

By Alison

I have one more treatment left of my BCG regimen. I have already had the treatment seven times. I have asked my doctor what, exactly, happens during and after BCG instillation to make nascent cancer cells – or for that matter fully-grown cancer cells not captured in surgery – die off.

He gave me one of those answers that makes sense for the moment but quickly fades away. It has something to do with the inflammation that the BCG causes my normal cells to develop in its presence. Cancer cells do not respond to inflammation the way normal cells do; they just die.

He said that similarly, radiation (in careful amounts and in the right spot) does not kill all the normal cells; some may become injured, but heal. Cancer cells do not heal, they die from radiation. They have no self-healing mechanism. At least, I think that is what he said.

The workable thing about bladder cancer is that it is inside a self-enclosed and thick organ, so what is in effect a topical treatment can be used.

I have read this week in the New York Times about the near-miraculous healing of end-stage melanoma that takes place with a new preparation that blocks the signals of a certain gene that drives the melanoma’s growth.

Patients who were filled with tumors and who had days to live, have lived for weeks and months either tumor-free or virtually tumor-free after this treatment. That is, they did for a while. Many have now relapsed and died. The cancer cells apparently figured out how to use another gene to do the same thing they had been doing with the first gene. The tumors came back. The researchers now think it will take a drug cocktail – rather like with HIV – to get the job done.

It is hard not to personify cancer. Think of something so ruthless, so aggressive, so – well, malignant – as to go to such lengths to stay alive. It is hard not to give it an evil face. Yet the will to live is in everything alive, in all of us. Wanting to live is not evil. But when the wanting-to-live is also foolish, such as growing so fast and in such damaging ways as to kill off one’s host, then it is easy to call it evil and stupid as well. But cancer is, in fact, mindless. It is simply unfolding as it must once it gets a good hold.

The treatments go like this. I get there on time (I have about a 20-minute drive to the doctor’s office) and wait a bit after signing in. All my treatments are in the late afternoon so I won’t miss too much work. Then a nurse calls me to the back and takes my blood pressure, pulse, and temp; she asks me how I have been doing. By now I know the two nurses who have cared for me a little, so we can chat and be nice to each other as we get ready.

The doctor comes in and asks the same questions and says he is pleased with how things are going. I do not have a fever; I do not have painful urination; I do have mild occasional twinges in my belly which I assume are from my bladder. Then he expresses encouragement, leaves, and the nurses stay.

I strip below the waist and cover myself with a blanket. I lie down on a table. They do not put me in stirrups, which surprised me at first. I just put the soles of my feet together and bend my knees out; that is all the room they need to do the procedure. After a swipe with an iodine cleanser, they empty me out with a catheter. They leave the catheter in and hook it up to a small bottle of a clear liquid. This is the BCG. They hold it up high and open the valve; I feel the cool liquid inside me as it flows in, a very odd sensation indeed.

They are gloved up and using sterile technique. Everything the BCG touches will get thrown away as dangerous medical waste.

When the bottle is empty, that is it. Now my instructions are to not urinate for an hour or an hour or a half; also, no drinking water or anything for the same length of time. After the hour and a half, I am to pee and drink drink drink. I get up, get dressed, and go.

The nurses are performing a special ministry with me. They are kind and helpful. They explain everything they are doing as they do it. They make this intimate touching seem quite matter-of-fact. Not just as something they do all the time, not indifferent: more like a comfortable laying on of hands that we women can do for one another when it is needed. In childbirth, say, or with nursing; or with illness.

When I first urinate after each treatment I am told I must pour undiluted chlorine bleach in the commode, afterwards. This is to prevent any TB bacilli jumping up and infecting someone else; also to prevent live TB entering the municipal water system. I joked with some friends that I am probably should hold up a bottle of bleach and a toilet brush as I walk everywhere, chanting, “Unclean! Unclean!”

Next up: About Positive Thinking

Thursday, February 25, 2010

Demand a Hair Test

It was a bit unnerving when the campus police held a special assembly and asked all the Jewish students to attend. A pogrom?

This could have happened anywhere in the USA. In fact, it was in Florida. It was the 1980's. I am a political activist and I'm always at risk of going to jail.

One thing we’re raised with – do not go gently...

Why did the police want to talk to us? It was nearly time for Purim, the festival of victory over hatred and jealousy, described in the Book of Esther. A Jewish leader named Mordechai had saved the King and now the King’s Prime Minister, Haman, wanted Mordecai and all the Jews killed.

Mordechai learned of this terrible plot and asked the Queen, his niece Esther, to prevail upon her husband to prevent this slaughter. Getting to see the King was quite a trick because he was not a rational man. He’d had his previous queen executed after she refused to dance naked in front of a bunch of his drunken friends. Then he held a year-long beauty contest to pick his next wife. And now he was ignoring her.

Esther fasted for three days, and the King agreed to see her.

She convinced him to honor Mordechai instead of killing all the Jews. As I said, victory, not that Mordechai particularly wanted to be honored. The King's idea of how to honor him was a silly parade throughout the capital city.

I had already bought a tub of ground poppy seeds and was looking forward to biting into Haman’s black heart, which is what the cookies symbolize.

In honor of Purim, the festival of victory, we make triangular cookies with poppy-seed filling. I like to make a vanilla butter cookie dough and cut circles with a round cookie cutter. Then I put a spoonful of poppy seeds in the middle and pinch the circle into a tri-cornered hat, nearly encasing the poppy seeds.

I attended the assembly. Most of us sat near the doors, ready to escape. The police were there to warn us. They knew we’d be eating poppy seeds. They wanted to inform us of our rights: Demand a Hair test. A urine or blood test will show positive for opium. Only a hair test can show that we really ate legal harmless poppy seeds.

There is a drawback. A hair test will show your last seven years of drug use. Be ready for that – but the police will only prosecute current infractions like driving while on opiates. Poppy seeds can cause a drug test to be positive for opiates for a month after ingestion. This is true even if you only eat a poppyseed bagel.

Consider yourself warned. Demand a hair test if you eat poppy seeds at all.

Tuesday, February 23, 2010

Name Parity

Medical offices are a problem for me. I believe in name parity. Any medical personnel who address me by my first name had better tell me his or her first name, pronto. I am not comfortable being address by my first name by somebody younger than my youngest child, and then being expected to call this youngster by the title Dr. _________ or Ms. ________.

It’s as if this medical person is trying to declare a power position by addressing me as if I was a child, and then demanding to be addressed as an adult.

I recently discovered that my insurance will subsidize the cost of a massage if I get one in a chiropractor’s office. When I showed up for the appointment, I was handed a stack of forms to fill out. Diagrams to show where I hurt, lists of diseases I might have, and the question: How would you like to be addressed? I thought that was a nice touch.

Since I knew that the massage therapist prefers to be addressed by her first name, I wrote my first name on the form.

Then the chiropractor came out and addressed me by my first name and introduced himself as Dr. _______.

Unfair! I had filled out that form under false pretenses.

I suggest that name parity be the default. If I want to be called Ms. _________, then I should address the other person as Ms. __________ or Dr. __________ or Mr. ____________. And if the other person wants to be addressed by a title, then s/he should address me with a title.

It’s hard enough to ask for medical help without having to deal with a sophisticated version of name-calling. Name parity is a fair solution.

Sunday, February 21, 2010

Marriage, Career, and Self-hood

A neighbor is now facing a quandary that nearly destroyed my marriage about 30 years ago. I’m not proud of the choices I made at the time, and I my experience has not enabled me to give advice that might make things easier for my neighbor.

My neighbor has a Ph.D. in English, but has never gotten past the adjunct level in her teaching. Adjunct pay is not a living wage. She’s held as many as 3 adjunct positions at 3 different schools at the same time. She’s living with her true love, the only man she’s ever loved in her entire life. He is unemployed, but he does own his home, and he is active in his church and community groups.

My neighbor decided to ask her true love what he’d think of moving to another state if she could get a job as a tenure track assistant professor. He said NO.

This may look like he doesn’t love her. I don’t think so. I think there are many things that frighten him. And losing her isn’t even on his list of fears. He thinks she is a keeper. I think he expects her to stay just because he said NO. For him this choice is no more difficult than "What's for dinner?" If she offers salad, and he prefers cooked veggies, all he has to do is say NO to the salad.

I wanted to go to medical school, in order to change the medical profession. Yes, I used to be an idealist. Or at least more of one than I am now. I had a job. I had children. An intense marriage like mine requires a lot of time. But I made the time to take the classes to finish my BA and take the MCATs to qualify for medical school.

The local medical school was run by male chauvinist pigs who were hostile to women with children. They were sued for writing “Stay home and have babies” to a woman candidate whose husband they accepted. The husband had lower grades and lower MCATs. They were currently in a fight with a woman who wanted extra years to finish her degree so she could be there for her daughter. Truth be told, I would have wanted the extra years, too. But we never got to the point of having that discussion.

My husband’s assistant professor job was not going well, and I could see that he was going to be denied tenure. I was invited to interviews at out-of-state medical schools. I asked my husband if we could move if I got accepted at a medical school un another state. He said NO. I asked if he’d wait for me if I went to school and came home when I could. He said NO.

We had and have a good marriage. We were raising children together. I had just taken a grueling academic course and done well. I had to choose – our marriage and family or a chance at changing the world. My husband did not have to make that choice. His career, even a career in limbo, came before our marriage. In one sentence, one word, he made clear that he would not take risks with his career for mine. He knew that I was stuck on him. And he came from a world where men’s careers come first.

Still, I thought about leaving. What did it mean to throw away a marriage for a career? My father did that. I did not respect him for that choice. He actually said, “Anyone can have a marriage and family. Only I can have my career.” But if I didn’t go to those out-of-state interviews, was I was saying that my dreams don’t matter? Was I making the traditional woman’s choice out of weakness?

My neighbor has no children. She has not married her true love. He has no career. Do her dreams matter? On what criteria can she make her choice? Is she willing to change career directions in order to stay with her man? Is her man worth it? What are her priorities?

I’ve tried many careers. I’ve analyzed sewage at the sewage lab. I’ve taught high school and science camp. I’ve fixed computers. If it’s legal, I’ve probably done it for pay at some point. I’m looking at another career change right now.

I did not give up on trying to change the world and change the medical profession. I became an alternative healer. And I chose never to accept money for this kind of service. I have not changed the medical profession. I have not changed the world. But I have improved the health of my friends and family.

What I value most is having a nice family and a pleasant home. Those things depend on being with my family – not on my career. It took a great deal of emotional and mental struggle to figure this out. I think I traumatized my children.

My children waited until they had their careers before having children of their own. My younger daughter married a man who will travel the world with her career, or stay home and take care of their children while he waits for her return.

I have no advice for my neighbor.

Thursday, February 18, 2010

weird adventures of the heart rate kind

The last evening of 2009, I felt weird, my heart was beating kind-of-fast. I took a hot bath and threw in some dead sea salts because they relax me. I got out of the tub feeling better and went to sleep.

I awoke about 2 AM with my heart racing. I had not had a nightmare. I got out our blood pressure wrist gadget which also measures heart rate. 133 beats per minute. I lay there hoping my heart would calm down and let me go back to sleep. An hour later, my heart was still racing and I felt sick. I asked my husband, the alien, to call a cab to take me to the emergency room.

The only other time I asked him to take me to a hospital was when I was in labor with our first child. During that visit, I learned that the hospital could do nothing to help me. They didn't give me pain killers and I had to deal with rude nurses. We didn't bother with the hospital for our second child.

For that hospital trip, we had to borrow a car, because ours was out of gas.

Now, we don’t own a car because there’s no place to park. There’s also no place to park downtown. I wasn’t in imminent danger of dying – I just felt awful – so an ambulance was unnecessary. A cab would get me there and then go away. Perfect.

When I walked into the ER, my heart rate was down to 124, but I still felt awful. I had imagined they’d have a pill or a treatment that would bring my heart rate down and help me feel better.

They didn’t. Deja vu all over again. At least this time I knew I wouldn't be coming home with a baby.

The hospital had rude staffers who wanted to know if I’d come in for a free meal. Can't they tell the difference between a sleep-deprived employed person and a homeless person? I’d just spent more on that cab than the cost of a delivered hot meal. And I don’t like the taste of hospital food. I asked the staffer to please check the computer and see how often I’d been to the emergency room. This was my first visit ever in my entire life, but I did not expect to be believed. The staffer did not check the computer.

The next step was scanning my insurance card. I’d been in too much of a hurry to hunt that thing up. I offered to tell them the number. I punch it in at the gym almost every day. The staffer said he wouldn’t believe me if I told him. My husband had his, so they scanned that.

Then they got the blood drawing person who gave me permission to scream while she jammed an IV tube into my arm. First she hooked up a breath frequency monitor and an oxygen level monitor. I didn’t just scream, I also breathed frequently enough to upset the monitor. Most of the time I breathe too slowly (from all my yoga practice) and that also triggers the monitor alarm.

They took at least 6 tubes of blood (I didn't watch the whole process) and then hooked up heart rate and blood pressure monitors.

Nobody came by with a magic pill. Nobody did anything to help me feel more comfortable.

A doctor came by and asked what I wanted. I told him I wanted my heart rate to slow down. He asked what I expected him to do about it. I told him I had a fantasy that they’d have a pill or other medicine. He responded, “You said it. It’s a fantasy.”

When I got home, I went to the Mayo Clinic website. It says right on the website that you can slow the heart rate by putting ice on your face. Nobody at the emergency room knew that.

Staffers came by repeatedly asking me about my drug usage, my alcohol and caffeine consumption. And they clearly did not believe me that I have no prescription drugs and I do not drink alcohol or caffeine. No coffee, no black tea, no colas. No illegal drugs, either. They took more blood – I’m guessing drug tests. Nobody said why. And then more blood for a thyroid test.

Alarms went off, loudspeakers blared, people screamed. Emergency rooms are not relaxing places. Nobody even gave me that free hospital meal.

After a few hours, a nurse told me that tests were coming back – all negative.
They ran EKGs. They did a sonogram of my heart. They injected radioactive stuff into my blood and ran a lung scan looking for clots. They certainly have enough painful tests they can run. By this time I had figured out that they weren’t going to help me. I told them I wanted to go home. I’d been there 6 hours and nobody had done anything to help slow my heart rate.

The nurse offered to ask a cardiologist to talk to me. I said that would be great. I waited another 8 hours for that cardiologist. Nobody came by. I was allowed to drink water and use the toilet. But nobody did anything to help me feel more comfortable. They seemed content to document my discomfort with their monitors.

I made an appointment to see a cardiologist a week later – that was the earliest they could book me. And finally my heart started slowing on its own.

Again, I asked to leave. Another doctor came by and asked why I wanted to go home. I told him nobody wants to be in an emergency room. He got all huffy and told me I had just insulted his workplace. I tried to elaborate – not just his emergency room – nobody wants to be in any emergency room, ever. He stormed out of my room seemingly furious. One of the nurses told me he’s done that before. He’s not a resident. He’s a regular doc on the staff. I have to wonder if he’s ever been a patient in an ER. If he thinks we’re all crazy for not wanting to be there, he should try it.

I had to sign a form that said I was leaving against medical advice and that I knew I could die if I left. I told the nurse I also knew I could die if I stayed.

When I saw the cardiologist a week later, he looked at all the blood work and EKGs and the sonogram and the lung x-rays. He couldn’t figure out what had happened. He had me wear a Holter Monitor for 2 days. That meant no baths, no showers, no swimming, not even a sponge bath. For two days. I told him he was ruining my sex life. All those receptors on my chest meant I couldn't even have a tummy cuddle.

During the office visit, my heart got up to 110 bpm. The cardiologist didn’t seem concerned.

I told him I like to get my heart rate up that high, when I'm biking up hill or working out. Just in case I hadn't noticed, the cardiologist pointed out to me that I was not currently exercising.

He was more interested in my slow breathing. He had me take a deep breath while he listened to my lungs and heart with his stethoscope. Then before I could exhale, he asked me to inhale more. And again. And more. And again. And more. I figured I could keep that up longer than he could. My yoga training has given me excellent lung capacity. Eventually he got tired of the game.

I agreed to wear the monitor. He did mention that one blood test was slightly high – the potassium level, but that’s a good thing. Often people who have a fast heart rate have dangerously low potassium.

The next morning, Saturday, I got up, did a Buns of Steel exercise tape, like I often do, biked to my 90 minute yoga class, and biked home. I did not go for my usual half-mile swim at the gym after yoga. Swimming requires getting wet. We had guests coming over for dinner so I got their room ready. That meant lots of going up and down stairs. I walked my dog several times. I jumped on my trampoline.

When the guests came over, we went for another walk. We played on my balance balls. My guests suggested I write all this exercise down so the cardiologist would know there was a reason for my frequently accelerated heart rate.

The cardiologist didn’t comment. He said he’d get back with me in a week. I gave him two weeks. He didn’t contact me. I was still having accelerated heart rate spells, often at about 2 in the morning. And I was still taking dead sea salt baths to calm myself in the evenings.

I surfed the web and found that motherwort tincture is an old time remedy for accelerated heart rate. 15 drops in a glass of water, every 8 hours or when needed. Whole Foods sells a bottle for about $10. I bought one bottle. It works. I was sleeping through the night again. I timed the doses for 5 AM (when I usually get up to meditate), 1 PM and 9 PM (when I go to bed.).

I felt trapped by these herbal drops. It was like having a lifetime sentence. But at least I was sleeping at night. Then one day, after a few weeks of this routine, I forgot my 1 PM dose. It was 4 PM when I remembered it. I took it right away. When 9 PM came, I decided to take my regular drops even thought it was only 5 hours since my previous dose. The official dosage is 15 to 40 drops. I was taking the minimum 15 drops. The official instructions say “or when needed.” Taking 15 drops 3 hours early didn’t seem like it would be dangerous.

Plop! I felt my blood pressure drop. I had to lie down within minutes of taking that early dose.

I still felt weak in the morning. I did not take my morning dose. I decided I would not take any more of that motherwort tincture unless my heart rate went over 100 bpm. I checked my heart rate in the afternoon. It was up to 80 bpm. For me, that’s high. It’s usually in the low 70s when I bother to sit down. But it's not uncomfortable, or dangerous. I did not feel sick.

I took another dead sea salt bath in the evening, and a few hours later my heart rate was up again over 100. I decided to read the label on the dead sea salt bag. It contains potassium chloride. I took another 15 drops of motherwort, and went to sleep.

That was over 2 weeks ago. I have not taken any motherwort or dead sea salt baths since then. My heart rate returned to the low 70s a few days after I stopped the dead sea salt baths.

Dead sea salts are good for most people. But there’s always going to be somebody who is allergic to anything. I emailed the cardiologist that I'd found the problem. He did not reply.

I went to the gym. I climbed the 60 stairs to the 3rd floor two-at-a-time. I got on the stationery bike and started the dragon-chasing program. I chased those dragons up hill and down. The bikes have built in heart-rate monitors. I got my heart up to 141 bpm. It felt good.

Tuesday, February 16, 2010

Strip Pilates and Belly Dancing in PT

Yesterday I accidentally wound up in a Strip Pilates class. It didn’t start out that way. It was a sort-of impromptu. We had already stripped down to our thermal underwear for flexibility. The teacher started talking about the importance of not letting a groove form between the shoulder blades. She took off her shirt to show us her back. The only way she could check our backs was if we did the same.

Then we watched each other’s backs as we learned to move our arms like vertical snow angels, using muscles only. I was the only one wearing a tan bra. Everybody else (this was an all female class) wore white. It was truly amazing to watch the teacher stretch her arms to the side without moving her scapulas.

She can move her upper arm bones as if they float freely in the joint sockets. We all tried to copy her and laughed when she repeatedly tried to help us hold our scapulas still with her hands. The classroom does have front mirrors and a side mirror. We may need to install an angled back mirror on the back wall/ceiling juncture.

My left shoulder looks almost normal now, but it does not move normally. I’ll try any exercise. If Strip Pilates can increase my range of motion and reduce pain, I’ll be back.

Then my Physical Therapist, Young PT, decided to tease me about belly dancing, as if women my age didn’t do such things. I took Belly Dancing for Physical Education about 40 years ago, and I still remember some of it. One thing I like about Young PT is that he treats my body like the tool that it is. Even though he has to ask me to get into gross-looking positions and has to hold me in ways that could be embarrassing, he is always businesslike.

So, I had no hesitation lifting up my t-shirt almost to bra height and demonstrating rib-cage isolations. Pick up the ribs (which makes the waist look smaller) and slide them to the right, then to the left. After everything is sliding smoothly, rotate the ribs in a circle: right, front, left, back. After a few rotations in that direction, reverse.

For a flash, just for a flash, Young PT looked at me appreciatively, as if I was a woman, and not just a body injured in a car hits bike accident. I heard my girlfriend from 40 years ago saying, “You’d better not do that in front of any man but your husband.” My skin is no longer elastic. The muscle definition is marked. But I’ve still got the smooth moves. Young PT made a quick recovery. “That’s good exercise.”

When I got home, I checked myself out in the mirror. I was impressed. I could also see where some of my abdominal muscles need work. I went to Amazon and ordered the least expensive belly dancing video. About $6.

Those abs will come in handy at Strip Pilates, too.

Kathy Smith: Flex Appeal - A Belly Dance Workout

Note: if you buy from this link, my friends at simegen get a cut of the profits.

Sunday, February 14, 2010

Why Me? Why Not Me? Part Four

This is the fourth installment in Alison's ongoing story of her bladder cancer treatment. You'll find the others if you search this blog for Alison.

After the Surgery, the Treatment Plan
by Alison

So I had to walk around for a whole week with a catheter inside, after the surgery. My doctor said it was so my bladder could heal from the tumor removal – by not getting full and empty, full and empty, I guess. Now THAT was inconvenient. They keep a catheter in a person’s bladder by inflating a small balloon, next to or around the actual tubing, so the tubing won’t slip out. The balloon is bigger than the exit. The problem is, the balloon rests, most of the time, right on the area of nerve tissue that tells you you have to go. A week of having to go, only not really having to go, because I was already “going” – the tubing constantly emptying into a bag. Oh, and where was the bag? Why, tied around my leg of course. Day and night. I emptied it pretty often so I wouldn’t audibly slosh when I walked.

The other times I had had a catheter installed – during a C-section childbirth and then during a different surgery – I had a big problem restarting the normal procedure when the catheter was taken out. I mean, I couldn’t hardly. I had to run water, and pour water, and think about water, and even then it was very difficult and quite awhile before all was smoothly correct. This time, however, my doctor had a great trick to avoid that problem and I share it here for all of you with post-catheter bladder shyness: The nurse puts in 180 ccs of sterile water into the catheter tubing, a little less than a cup. Then she takes the catheter out, and then you go without hesitation, due to sheer volume. A great improvement, and no further problems.

So back in the office my doctor sits down with me all serious. I have bladder cancer. It is in situ, which means it has not spread, and none of the biopsies of bladder tissue showed any rootlets going into the muscle. In situ growths are at a low “stage,” meaning superficial, early. All this is very good. However, the tumors are high grade, meaning the tumor cells are nasty, already way different from normal cells, and ready to grow fast and spread if they can. In other words, surgery would not be enough to deal with this cancer once and for all. Remember, I could see the tumor all spread out (see #2, “Cystoscopy Art), and it seems obvious that any number of microscopic pieces of it could be left inside after surgery. Treatment must continue.

This next part sounds like science fiction. My treatment will take the form, he says, of a local instillation of attenuated tuberculosis vaccine. They will take this liquid substance, actual TB vaccine, made from weakened bovine TB bacilli, and put it inside my bladder. They will do this once a week for eight weeks.

And here is how it works: the TB bacilli, unlike that wily cancer, will alert my immune system to get down there and get to work. My white cells, my T-cells, my interferon, my interleukin, and who knows what else – they will all scream “Fear, fire, foe, awake!” and charge into my bladder and start sweeping. Or gobbling. Or chipper-shredding. Or whatever they do to this attenuated TB vaccine. And get rid of the cancer at the same time. Thus: it is not chemotherapy, it is immunotherapy.

In genuine tuberculosis, the immune system cells form capsules around the bacteria. In my situation, this is unlikely to happen. But it could. I could develop granulomas, little capsules of TB cells and immune system cells. If that would happen, this treatment would have given me TB, which would then be treated with antibiotics.

When I start to tell people that this is going to happen – treatment with TB vaccine – some ask, “Is this experimental?” They are surprised, as I was, to learn that this treatment for bladder cancer has been going on since the 1980s, with good results. It is called “BCG” therapy, which stands for “Bacillus Calmette-Guerin” after Drs. Calmette and Guerin, one a bacteriologist and the other a veterinarian, who developed the vaccine early in the 20th century. Up to two-thirds of patients treated with BCG never have a recurrence of bladder cancer. My doctor says, if I do, we can repeat the regimen. Or do it as a maintenance therapy, say every 3 months for a year. If the cancer comes back after that, or if the therapy doesn’t work, well, the only option is surgical removal of the bladder. A bridge to cross when I come to it.

I will, however, have the regular scans and appointments characteristic of living in Cancerland. I asked him at the end, “What about skipping all that anxiety and testing and just taking my bladder out now?” He said, “Well, what if the treatment works? We will have saved it. We only want to remove the bladder if we have failed to control the disease.” (Actually I misquote him here. He said, “If you fail BCG treatment.” Meaning I am the failure. Not the treatment. Doctors always talk that way. I don’t know why.)
Next up: No problemo.

Thursday, February 11, 2010

Barky is the New Bloody

When I watch Brit-coms, it always strikes me as strange that the word Bloody is used as major-league profanity. What? Are they referring to menstrual flow? Or wounds? Either way, these are normal parts of life, hardly worth getting upset about.

Profanity ought to be used for things that are truly upsetting.

Okay – I know I’m out of touch here. The most common profanities are about sex and excretion. Also natural functions. I doubt that people actually mean, “Go have a great sex life,” when they are angry and their voice tones imply insult. Taken literally, though, angry people do need to feel loved and cuddled.

Perhaps people do mean it when they say, “You poor fellow, you must be constipated to act so miserable. I hope you poop soon.” Okay those aren’t the exact words they use, but that is the literal meaning.

Profanity should be words that describe actual sources of irritation if not fury. In that spirit, I offer the word Barky.

You want irritation? Meet my dog Petruccio. Yes, he is named for the most famous rejected suitor in all of literature. When we took Buffy, our older female dog, to the animal shelter to select a playmate, the first thing Petruccio did was try to mount her. She rebuffed him. But ultimately she selected him as her playmate. His name used to be Cappuccino. The shelter assured us that he was house trained. We changed his name, paid to have him neutered, and several days later, we took him home.

Petruccio is not now, never has been, and never will be house-trained. We have ripped all the rugs out of our house. We have incontinence pads on the floor instead, and every time he gets one, we pop it into the wash.

Petruccio did like Buffy. She’s been dead over a year now. He growls, barks and tries to attack all other dogs on the planet. He’s a 16 lb beagle-mutt. He has a high-pitched unpleasant bark when he sees or smells other dogs. And he has an even higher pitched whining bark when he is displeased with us. He wants attention when we want to go to bed. He wants walks when we want to rest. And he doesn’t want walks when we do want to take him out. He barks. He does not win.

He is not a happy dog. He barks frequently.

I don’t like to hear his barking.

The combination of his unhappy barking and my response to hearing it is worthy of profanity.

I have found myself describing things as Barky when I’m not happy with them.

The Barky UPS delivery guy says he made a delivery attempt, but there’s no sticker on the door, and I was home and nobody knocked or rang.

The Barky strawberries had mold in the bottom of the box.

The Barky bus didn’t stop at my bus stop.

The Barky snow has shut the city down.

That Barky dog is an inspiration as well as a nuisance. He's 17 years old. I won't have to listen to his barking for too much longer.

Wednesday, February 10, 2010

The Hospital President Had a Bad Time When He was in His Own Hospital

First I got hit by a car, and then I got hit by a hospital. They duplicated x-rays even though I asked them not to. They took x-rays I specifically said I did not want. Then they showed me somebody else’s x-ray to convince me have surgery that I probably would not have agreed to, had I seen my own simple fracture. They didn’t feed me. They were slow about getting me off morphine – it took days of asking, and then they tried to get me to take Percocet, even though I told them I can’t take Tylenol drugs. And they never asked me if I wanted surgery. They scheduled me, and then when I asked for food, they said, “You can’t eat you are having surgery.” I never asked for food again. I didn’t want more surgery. And they didn’t think to bring me any.

They wouldn’t let me leave until I could negotiate a complex test of climbing in and out of bed, getting into and out of a chair, climbing and descending stairs, and getting around an obstacle course – all after 6 days with only one meal (which tasted like cardboard), and my system full of pain-killers. Where were my Miranda Rights? This hospital was prison and my rights were violated all over the place.

I wrote a letter to the President of the Hospital. He started out thinking that I was either mistaken or a liar. He checked out my assertions and the only one he couldn’t verify was that I had been show somebody else’s x-ray. Nobody would admit to doing that.

As long as I had his attention, I felt I needed to come up with one solid thing he could do to make hospital experience more pleasant. The one thing that seemed easiest to remedy was that nobody had explained what the surgery I had been tricked into actually was. My project then, was to get work-study students to interview people who have had procedures done and ask them what they wished they had known before they had those procedures.

Nobody told me that they were going to drill holes in my bones and run screws through them. Nobody told me I would be numb across my shoulder and down my upper arm for the rest of my life. Nobody told me that 95% of people who have the type of injury I had grow back on their own. Nobody told me why my x-ray was selected for surgery – why somebody thought my bones would not grow back naturally.

This is the kind of information I wish I’d been told before surgery. And I wish I’d seen my own x-rays. There are names on x-rays. These names can be displayed along with the x-ray on the computer screen. I wish it was hospital policy to always display names on x-rays when they are being used for decision making purposes.

In addition, I wanted the right to refuse x-rays. In fact, I wanted the right to refuse absolutely anything the hospital wanted to do to me. I didn’t like it that residents just came in my room, grabbed me, did stuff (which often hurt), asked a few questions, and left. I’d like these residents to introduce themselves, explain what they want to do and why, warn me if it was going to hurt, and ask permission before touching me.

Plus, I wanted the right to have my natural products, like psyllium and aloe vera and arnica gel. Okay without food, I didn’t need the psyllium and aloe vera. But I sure could have used the arnica gel on my bruises! I told several nurses that I use these products. None of them told me I could have them if my husband brought them in.

The above are all failures of communication. At least that’s a polite way to put it.

When I sent my letter to the President of the Hospital, I half-expected another rude brush-off.

Instead, he wrote asking to meet with me.

Earlier I’d been invited to meet with the radiology department. That meeting was a disaster. All I learned was that radiology had no interest in changing the way they do anything, no matter how compelling the reason. And they were sure it was impossible that I’d been shown somebody else’s x-ray. It didn’t matter that my husband had made a sketch of the x-ray they showed me, and it in no way resembled my own. I had a simple two-piece break. And I’d been shown an x-ray with 3 big pieces and at least 20 little ones. They insisted it could not have happened. They were in power and there was no ballot box.

So, it was with trepidation that my husband and I went to meet with the Hospital President. Rudeness is bad enough via mail. In person it becomes even more painful. This is the hospital where I expect to go for any treatment I ever receive. I’d like it to be a safe place. If I upset the President, it could become even more unsafe (if that is possible.)

My husband and I prepared a short PowerPoint presentation listing our major points for improving doctor-patient communication, and emailed a copy to the President before our meeting.

When we arrived for our meeting the President had printouts of our Presentation in his hands. And he had sent copies to two other people he wanted to help with the project.

As we booted the computer, the President noticed that the wallpaper on the desktop of my husband’s portable computer is a photo of his old MG that he drove when he was in high school. The President asked about the car. He had owned a similar one in his youth. This guy was human.

After discussing the car, the first thing he said was that he had been in his own hospital twice and he was not happy with the way he had been treated. He’d been given morphine, which he did not want. And Percocet, which he did not want. He had refused to let anyone touch his knee unless he could watch them wash their hands first. He knew the food was cardboard-flavored.

He wanted our help, preparing a PowerPoint presentation that he could show the doctors, in order to talk with them about doctor-patient communication.

Wow! It only took about 6 months of barraging the President’s office with emails and letters listing all the ways in which his hospital messed up. These same 6 months in which I have regained most of my mobility. These seem to be twin projects. As my body regains strength, so do my projects. This is a project that should never have been necessary.

Life is like that. I’ve never had a job (working for somebody else) in which I did not want to make major changes after about 5 months of working there.

I hope to be able to report real improvements in future columns. It pays to persist. It pays to put up with rudeness. It pays to prepare for meetings. I wish somebody had straightened out this hospital before I got there. I wish I’d never been hit by a car while biking. I wish people listened to me the first time. And mean as it sounds, I’m glad the hospital was just as horrible with the President as they were with me.

Thursday, February 4, 2010

Why Me? Why Not Me? Part Three

This is part three of Alison's ongoing story about diagnosis and treatment of her bladder cancer.

by Alison

“… And the blind shall see.” (Luke 4:18)

About a week after the cystoscopy where I saw my tumor(s) floating dreamily in the water, I had surgery and the tumor was removed. It was day surgery, and went like most day surgery does: you arrive, strip down, get put on a bed with wheels, are wheeled about hither and yon, and wait a lot between places. You’re in this assembly line and you end up in an operating room.
Everyone was very nice to me. I’ve noticed this before. I guess when patients appear before hospital staffers briefly on an assembly line, it is easier for the staff to be pleasant, attentive, and reassuring – compared, say, to a patient’s office visit or ER visit or a stay on a hospital floor. There, the patients are around long enough to make their own feelings and wishes known, and workers are expected to respond. They do not, under these circumstances, always respond helpfully. Geezer-Chick herself was waiting a long time in an ER for something to be accomplished and she said to a doctor that she didn’t exactly enjoy being there. You would have thought she had criticized his child or something. He actually said, “You are talking bad about my workplace!” He berated her for this. To her, it seemed obvious that no one wants to be in an ER – right?
I was horrified when she told me about that. I have worked in health care for about thirty years, and the first rule, actually right up there with Do No Harm because it is a way of Not Doing Harm, is Be Nice to the Patient. That includes not berating, not yelling at, not being sarcastic, not being rude, not putting down, not rolling your eyes, and just – stifling it when a patient is being a pain. (Note: Geezer-Chick was not being a pain at all.) The patient is the one seeking help; you, a nurse or doctor or whatever, are the one giving help, and indeed are being paid to provide help. For this period of time, these are your roles. Period.
I had to take this little test at the hospital where I work and one of the questions was about a hypothetical patient in the ER who is drunk and lewdly harassing a nurse. Among the multiple choice options about how to handle it was, “Go to the patient and explain that this is against hospital policy and he must stop.” I would never check that one, though it turned out it is the one the testers thought correct. No! Patients are not

supposed to know hospital policy. No! A drunken patient is not going to sober up when you talk earnestly to him. The nurse is supposed to either suck it up and deal, or get another nurse to tend to the patient who can. (I have strong feelings about this!)
Anyway. I ended up in an operating room with a lot of nice people bustling around in blue scrubs and paper hats. My doctor was there, greeted me warmly.
He chose spinal anesthesia for me. I was surprised, but he said it was safer. So the needle went in my back—not totally painlessly, by the way—and after a while I became totally numb from about the sternum down.
This lasted for hours. It is very very odd to touch your own thigh and not “feel” that touch, or to move your foot and realize it never moved. No matter how hard you try.
He also gave me something to sedate me mentally, but I never felt like I was asleep, the way I have in other day surgeries. I felt like I was more or less alert the whole time—though maybe I was not. I do remember clearly hearing my doctor say to the resident who was actually doing the work under his supervision, “See that? That is all CIS.” I knew what that was but my words took awhile coming out. Finally I said, “I know what you said. Carcinoma-in-situ!” They said yes, yes, that is right. Carcinoma in situ just means “cancer in place.” It is also good news, because it tends to refer to cancer that has not moved away from its original place, that is, it has not spread.
What seems most extraordinary to me is that the doctors worked with a camera and a light again the same way they did with my cystoscopy. They could easily see everything they were doing. My doctor said to the resident things like, “over to the left there…” I could not see the TV screen this time. But imagine! The doctors could! I suspect cleaning a bladder of tumor is roughly similar to a D & C – where a uterus is cleaned of its removable lining. I have heard a D & C described as somewhat like scraping out melon seeds with a tiny spoon, through a very small opening. It is (or was?) done by feel, not by eye. As such, there is some skill to it, and it can be learned. But my doctors could see exactly what they were doing. They knew the extent of the tumor and were able to take it all out. There have been untold generations of healers and doctors who could not see what they were doing and tried anyway; inside the mysterious human body. Now it is different. Now the blind can see.

Next up: Treatment Plan!

Wednesday, February 3, 2010

Being Remembered for Screaming

Sometimes I wonder what I'll be remembered for, if I'm remembered at all. Last week I received a message on Facebook asking if I was the tiny kid he remembered from the vaccination lines in elementary school in Iowa.

Yes, I was the tiny kid who screamed. He also remembered something that I have no memory of. He remembered that I got in line a 2nd time. If this happened, I must have been in shock. There is no way I would voluntarily get a 2nd vaccination. I was the sort of kid who screamed when I was forced into lines. I didn't want to be in line for the drinking fountain, let alone for a needle!

And what's even weirder -- while I do remember that there were boys at my elementary school, I do not remember any of them. I only paid attention to the girls. The fact that this boy remembered my screaming, when I don't even remember him does not bode well. I will not be remembered for my science teaching, my poetry, my essays, my novels, my screenplays and stage plays, or even my ability to repair computers. I will be remembered as the little girl who screamed when she got a vaccination and who did not remember her male classmates.


And there's nothing I can do about it.