Hopeful

I say this with great caution but I met with my medical oncologist last week and she was amazing. After my experience with Dr. Saint, I am hesitant to praise a new doctor. But when someone looks you in the face and says that with my type of cancer she has had 100% non-recurrence, it is hard not to feel hopeful.

I have an ordeal ahead, no question about it, but I am facing it head on, stiff upper lip and all that. Then they told me that my eyebrows would fall out. I wasn't prepared for that. Exhaustion, hair loss, nausea, etc. but my eyebrows. I've always thought that they were my best feature. I've spent hours on them. I get them waxed regularly. I buy expensive eyebrow cosmetics. Now they are going to fall out. Actually, I shut it out when they said that, but a few days later while having my hair styled, my sister gently mentioned it again. And then came the tears.

I know they will probably grow back and maybe even more lucious and frankly, who cares. But it was just symbolic of this unknown territory that I am facing. Though others have been there before, everyone has a different experience. Mine will be my own. But I have learned that I really don't have to do this alone. Friends and family have rallied to my side and no want has gone unheard. Also, I have a doctor who seems to care and seems positive about my possibilities, now if someone will just recommend a good eyebrow tattoo artist, I'll be set.

Helpless

I am sure by now that my readers (OK reader) have been wondering where I might be. Well friends, I have been in the hospital. Remember Dr. Saint? Dr. Saint made a tiny nick on a vein when inserting my chest port. Unfortunately, the tiny nick caused my right lung to fill with almost 2 litres of blood. So I spent the better part of the week in the hospital with a tube draining my lungs of the remnants. I understand that people make mistakes. What I don't understand is why, even when they know they made them, they don't do everything in their power to rectify them. He knew about the issue. He said it would probably pass, but to call if things got worse. I did, but he was leaving town. I really am not angry about the mistake, I am angry about the lack of care I received afterwards.

Most of the people at the hospital were great and my friends and family ensured that I was surrounded by love and support. But one of the nurses made me feel helpless. It was the night of the tube placement. They had tried another equally horrifying procedure the day before and the tube was the last resort. Besides the pain, breathing was difficult and almost every position hurt. I also had several IVs hanging from my hands and arm. However, none of these were useful at 3 a.m. when I had to have a dose of some mystery medicine. Not only did he question whether he could get it, he was chagrined when I implied that others had had no problem. Later he yelled at another nurse who stopped to help me. I was HIS patient.

I was angry. Later I tried to figure out why. And the answer was because I felt helpless. I had been let down by Dr. Saint. I had had to postpone my chemo treatment. I was lying alone in a hospital bed, and I was scared and in pain, and I needed reassurance. The nurse was a young, male who probably was technically very qualified but didn't know how to deal with middle age ladies who felt helpless. Maybe this needs to be a new class in nursing school, medical school, beauty school, anyplace that touches the most important parts of your body.

The Polite Response

We all know the polite response for every situation.

A gift: "Thank you (for that horrific sweater that I will never wear)."

A dinner party: "Please does anyone else want the last homemade chocolate chip cookie (that I am dying to eat after you've all gone)?"

Interacting with the public: "Excuse me (but you've parked your grocery cart in the middle of the aisle while you peruse the soups and I'm tired of waiting you incredibly, inconsiderate heap of parrot droppings)."

Then there is the most common question on the face of the earth: "How are you?" Everyone asks that, I have discovered. Maybe I just didn't notice it before, but suddenly no matter how small the interaction I have, the other individual asks .... And we all know the polite response: "I'm fine, thank you, how are you?" It is so pervasive that most people even know it when they hear it in other languages: Spanish (Como estas), Southern (How ya'll doing?).

So how do you respond when you have cancer? Most people aren't actually asking how you really are, they could just as easily be saying, "Hello, I have nothing else to say but I will throw in some vacuous comment because I don't know how to fill the silence that will now exist while I pack your groceries, fill your order, pass you in the hallway, examine you for some possibly serious health condition?"

I know this, but something inside of me rebels against providing the expected, polite response. At first, I just exaggerated: "I'm truly fabulous and couldn't possibly be better. How are you?" But that took too much effort, so now I just respond with a nod then "And how are you?" It seems to do the trick. No one ever takes me to task for not giving them a full and complete answer (except my mother) or even notices that I haven't given them the expected response.

This experience provides back up for my other experiment. I decided that I was wasting too much time signing things so I began to just scribble something quick that had a faint resemblance to my signature. To date, no one has questioned me or asked for something more legible. So I have learned to save time on little tasks so that my energies can be utilized elsewhere, like baking more chocolate chip cookies.

I was wrong ... I can't do it all

I assured my supervisor from the beginning, that though I may be sick and out a few days here and there, I would still keep going. Wrong! This week I had a port placed in my chest and discovered that there are things that can keep me from my appointed rounds. I told her this today, and she commented that she wondered when I would come to that realization. I think everyone knew this but me.

I thought I would be different. I thought I would push through all this nonsense with hardly a break in my stride. That has always been how I operate. But something happened, and I was not able to get up and go to work. I was barely able to cancel the appointments I had.

So I must face the fact that I can't do it all. That there will be times when I am unable to answer the 5 million emails I receive on an average day. There are even times when I am not able to update this blog (in case you haven't noticed).

I will do the best I can to try and keep up to speed, but I think, OK I KNOW, there will be times when I have to stop and rest. Even before I finished my Ph.D., I began looking for my new project. I guess I found it.

The Art of Mindlessness

I don't want to watch movies or read serious books and I even blew off the last opera of the season (though my friends assured me that I didn't miss much). Instead I watch mindless TV. Mostly "Everybody Loves Raymond" and "The Golden Girls", and I read trashy mystery novels. Odd, some people would listen to a concerto or read something inspirational, but give me a serial killer and a smart crack from Sophia and it's better than Xanax.

It doesn't matter if I've seen the shows before; it doesn't even matter if I saw them yesterday, it is the sounds of the voices, the little quips of humor that occasionally penetrate, I can't quite seem to figure it out. Sometimes I wonder if I need a 12-step group. "Hi, my name is Denise and I really do love Raymond."

This may surprise many of my friends who thought I only obsessed about Jane Austen. (Just because the last time I was in NY, I went to a Broadway show simply because one of the leads had starred in Persuasion, and because I spent New Years watching all 6 hours of Pride and Prejudice while knitting a long piece of purple cloth.) But, alas, I have given Miss Jane a break. This is not the time for parlors, courtships, private balls, and gentle laughter. This is a time for getting the bad guys and belly laughs and a time for Hollywood to quit making really bad Jane Austen movies. This is a time for mindlessness.

That dreaded 9 letter word

It hasn't even been a week. Me and everyone else is still adjusting to the fact that I really have breast cancer. As I reported yesterday, I spent Friday afternoon setting up appointments. These are not ordinary appointments. These are the kind that have to be coordinated like air traffic control, or like pairing the perfect meal with just the right diet soda.

It was tricky, but I arranged most of them and thought we had a plan, until those people got involved. Yes, the evil empire, the barbarians of the business world, the i-n-s-u-r-a-n-c-e people. As everyone knows, the goal of insurers is to not spend money or at least delay it until they have reduced you to a heap of jello encrusted with parrot droppings of course by then the patient has a) died, b) been shipped to Iraq, or c) turned to Christian Science. My whole house of cards so carefully arranged came tumbling down.

I actually wasn't even surprised and probably only mildly frustrated. I did decide to call the company myself and ask them why are they doing this to me, but after 5 minutes on hold, I realized the chances of me getting to speak to an actual human being who could actually do something was as remote as... well the insurance company paying claims without requiring your first born child.

So AvMed, Blue Cross, United, whatever, just tell us what we have to do and we'll do it, but PLEASE no more torture by insurance.

Answers

On Friday, May 7th, I was officially told I had breast cancer. The doctor, who is by the way kind of a saint, explained everything in minute detail and mapped out my treatment plan. In less than 2 weeks I will begin 8 treatments of chemotherapy followed by surgery and then we'll go from there.

I got a break for lunch and then spent the afternoon scheduling the multitude of appointments that follow. By the time I got home that evening I was exhausted, so friends, my blog remained quiet for two days. I have wanted this blog to remain light and to see the humor of what I'm going through, but that hasn't been easy, until I did my research.

The subtype of breast cancer I have is called triple-negative, basal something or other. Several of my friends researched this as well, and we all uncovered the same fact, this genetic form of cancer is most frequently seen in pre-menopausal African-American women. I am neither pre-menopausal or African-American. My mother always tells me that I get the weird diseases and when I shared this with Dr. Saint, he concurred.

On Thursday, I said I wanted to know, and now I do and now I have an idea of what I'm facing. There will be moments, maybe even days when I fail to find the humor, so forgive me, but don't say you weren't warned.

Sacco and Vanzetti

Tomorrow I will see the surgeon-oncologist and find out something or nothing. Oddly enough, I am more afraid of the nothing. I can endure many things, but the waiting and not knowing is about to make me explode. It occurred to me that this is part of the process. Kind of like the opera, "Sacco and Vanzetti."

A few years ago, our local opera conductor wrote his magnum opus. A merry, whirlwind ride through the investigation, arrest, trial, conviction and eventual execution of Sacco and Vanzetti. It was long, really long. In the next to last scene, the two accused men and another accomplice were led out, one by one, and as each one disappeared from the stage, there came a flashing of lights indicating they had met their fate in the electric chair. This particular scene was drawn out in painstaking detail (kind of like my description here). My friend's son spoke for us all when he volunteered to go pull the switch himself just to get it over with. The execution scene was then followed by a raucous musical number.

So I am thinking, by the time I go through test after test after test, I will be relieved at whatever diagnosis they throw in my direction. Now it all makes sense. I only have to start rehearsing the raucous musical number that follows.

My new hobby

In times of stress, people often recommend that you take up a hobby. About 10 years ago, I was very burnt out by my job. Knowing that I needed something to do besides fret about work, I decided to get a doctorate degree. I called my advisor on a Tuesday and she told me to come to class on Thursday evening. It was just that simple, really. Then 10 short years later, I had a Ph.D. While I was trying to figure out what to do with it, my body took control of the situation and I was forced to channel my energies in new directions.

There isn't much I can do except fret, but hey, I didn't get a research degree for nothing. So I have been researching my situation in order to diagnose my condition and inform the doctor of my recommendations for treatment. As the date of my appointment grows nearer, my "hobby" has become an obsession. Just this week alone I have decided that I have breast cancer, lymphoma, thyroid cancer, lung cancer, endometrial cancer, and hoof and mouth disease.

Today I met with a colleague with whom I am going to work on a project to educate men about prostate cancer. So I am in the process of learning more about that particular disease. Thinking about prostate cancer was kind of a relief, that was one I could rule out in my obsession for self diagnosis, I think.

I'm tired

Today I admitted defeat in the battle to keep my sanity. In the words of one of my all time favorite film characters, Lili Von Shtupp, "I tired."

I'm tired of the waiting and not knowing and wondering. I'm tired of facing each day and not having all the answers. I'm tired of keeping up my spirit so others won't think that I'm weak. In order words, I'm tired. And all this emotional roller-coasting has made me, exhausted.

Lili found the answer to her woes in the arms of Sheriff Bart, but my situation is more complex, I need two men, Ben and Jerry. God bless them both.

I am a professional do not try this at home

I picked up my MRI results today including a CD with the actual film and a written report. I can only figure out a few descriptions here and there but that did not stop me from interpreting what I read. I shared it with friends and family though I have no idea if what I was relating was the least bit accurate. There were a few words that made sense. For example, my actual breasts appear to be cancer free. There is a proven malignancy that needs to be surgically removed. There is also a mass in the sternum area that looks different than the nodes in my left axillary, or as I like to say, the armpit.

So in truth, I don't know a whole lot more today than I did yesterday. But at this point, any information that doesn't say, "Sorry miss, you have 2 weeks to live," seems like a good thing.

Limbo

Dante identified Limbo as the first circle of hell. Limbo was for those not quite good enough for heaven (unbaptized infants, pagans who had never heard of Christ) but not quite bad enough to deserve the higher more tortuous circles of hell which were reserved for the real sinners: adulterers, murderers, people who wear white shoes after Labor Day. Dante says there are no real tortures in Limbo, only sadness and despair.

I am in Limbo. Everything I do is tinged with sadness, but even more frustrating is whenever I think of making any kind of decision or plan, I always end it with, I'll decide that after Friday. It's an uncomfortable existence that thousands before and after me face so I know I am not unique, odd, but not unique. I wish all this could have been taken care of in April, I hate tinging a whole new month with this business.

But it could be worse. I could be in another circle of hell, the one where they make you watch football and eat Cheetos. I actually prefer despair.