Monday, March 27, 2006

Calmness

I have been calm about my diagnosis of cancer. I have told friends and family matter-of-factly of the diagnosis and the upcoming hysterectomy, and cracked a few jokes. Most of the people around me have been more upset about it than I have been. What bothers me is that I don’t know why I am taking this so calmly.

Shouldn’t I be more worried? More agitated? Shouldn’t I have cried some or kicked a wall? If I had kicked a wall, I would probably have cancer and a broken toe, but I would have released some emotion.

As I have said, this past year has been a lousy one. It is just over a year since I woke up next to the cooling body of Bernie, the man that I loved and lived with for 20 years. I took that relatively calmly, too.

This is not to say that I did not mourn. I mourned and grieved, but I got things done and cried surprisingly little. I chalked this plaid reaction up to the precarious health that Bernie had been in for many years. For about half of the time we were together, he was on dialysis. Three times a week, he would go to be attached to a machine and have his blood cleaned.

Not every time, but often enough, after I kissed him goodbye and he walked out the door to a treatment, I would think of all the things that could go wrong. Being hooked up to a dialysis machine is very safe, but there are several things that can go wrong, an air embolus or a chemical imbalance or a break in one of the tubes. And he might not come home. Bernie and I also spoke often about the fact that he would probably die years before I did. He was the world’s worst pessimist and, of course, he had to be right about that.

So, I was quite used to the idea that he could die at any time. This is why I believe that I took his rather sudden death as calmly as I did. He was also woefully unhappy in his last few years. Years of dialysis and immunosuppressive drugs had taken their toll. He was depressed and in pain a great deal. His death was a great relief for him. It was also a relief for me.

A few weeks after Bernie died, I had to put our dog down.

Petie was a pit bull with a serious aggressions problem, not a good mix. We had had her since she was 6 weeks old. We trained her, worked with her, medicated her, but she was unpredictable and had come out of a litter with serious behavioral problems. Experts, including professional dog trainers and my vet, had told me that Petie was a disaster waiting to happen. She bit me several times and bit Bernie once on the face, but he loved her and would not hear about putting her down despite the danger. Her aggression problems escalated after Bernie died and I reached the painful decision to have her euthanized. I shed a few tears, but remained calm.

I went through the whole annoying eye problem calmly.

Several people have commented on how brave I am. I think I am just calm.
Bravery implies that I have a choice. So far, I have had few choices. The best treatment for what I have is a total hysterectomy, so I will be having that done. I don’t think I am brave. As Bernie used to say when people called him brave for dealing with his kidney disease, “If I thought being a craven coward would help, I would do it.”

My question is: When will I stop being calm and what will happen to me then?

The only cracks in my calmness come in sleep. I normally rarely remember my dreams, but twice in the last two weeks, I have had what can only be seen as anxiety dreams. These are dreams where I am prevented from getting somewhere or getting something done. Maybe this is a good outlet for feelings that are not coming out any other way.

Today, I banked a second and final pint of blood. I went down to the New York Blood Center, which is a pleasant place to donate blood. They tried putting the needle into the same vein as they used last Thursday. At first, the stick just hurt more than usual, but was bearable. I mentioned the discomfort and the technician moved the needle slightly. She must have hit a nerve or something. I screamed and hit the ceiling. She immediately pulled out the needle and called over another tech to stick me in my other arm.

I have donated well over a gallon of blood over the years and I may have reached two gallons. I was even an on-call blood donor for a few years and was called in when they needed B+ blood. So I know what it should feel like, and this was certainly not it. The second stick went much easier and everything went well. I sat and had orange juice and a cup of coffee afterward.

Years ago, when I lived in New Jersey, I donated blood once or twice at the American Red Cross center in Montclair. Montclair then was simply full of elderly white- or blue-haired ladies who spent hours volunteering at places like the Red Cross. At the Montclair center, you would donate blood, and then this 92-pound lady would walk you to a table and offer you tea sandwiches, little triangles with the crusts cut off and filled with ham salad or tuna. They would get you a cup of coffee or tea and coo over you and tell you how wonderful you were to donate blood. The New York Blood Center was wonderful and had a nice array of little packets of Nabisco cookies and excellent coffee, but it doesn’t compare.

Tomorrow, I turn my attention back to my eye. I have a follow-up visit with the radiologist. Wednesday, I start a clear diet for the colonoscopy and see the cardiologist. Thursday, I have the colonoscopy.

Friday, March 24, 2006

Name That Blog!!

The original name for this blog had been "My Right Eye," which made sense when it was about the saga of my bout with an autoimmune inflammation behind my eye. Now this blog is about my diagnosis and treatment for endometrial cancer.

I have changed the name to "A Thin Slice of Health," but I am not really fond of it.

Does anyone have a better name for this blog? Anyone coming up with a funny, original, and different name for the blog will be treated to dinner with me. (I can hear all the gasps now!)

So, start those entries rolling in.

In the meantime, you can all add comments to this blog. A blog is supposed to be a dialog, not just a diary.

Thursday, March 23, 2006

Do Do that Voodoo That You Do So Well

So, I was contemplating my run of bad luck and I mentioned this to my sister, Susan. Her response was, “What bad luck?”

Starting in November 2004, I totaled a car. In February 2005, my oldest cat died and then Bernie died three days later. About six weeks after that, I had to put our dog down.

My eye started to act up and got worse, and had to be treated with high doses of prednisone. I then had a biopsy that gave me the worst black eye of all time, and I underwent radiation treatment on the eye.

Then I found that I owed $1800 to the IRS for 2003. (I sent them a check. They sent the money back. I called and found out that I did owe them the money, so I sent the check they sent to me back to them. I got a letter saying that I hadn’t paid. I cleared that up. I got another letter that said that I hadn’t paid. I cleared that up. I finally got a letter that said that I paid. Sigh)

I cannot seem to get past a second interview for a writing/editing job that pays me enough so that I can quit freelancing.

And just when I got out from under the general lousiness of 2005, I was diagnosed with cancer.

That bad luck, I told Susan.

Somewhere, someone is sticking pins into a voodoo doll of me.

Be that as it may, things are proceeding apace for the upcoming hysterectomy.

I went for a series of CAT scans on Monday. For this, I had to drink about a quart of white stuff. The first sip was not too bad. The second through two hundred and second sip tasted god-awful. There were two Hasidic men sitting in the waiting room with me and I wanted to ask them for the Yiddish and Hebrew words for “god-awful tasting” so that I would have more words to describe this flavor, but I chickened out.

The CAT scan was pretty normal. They injected me with a contrast medium and warned me that I might have a hot flash and a metallic taste for a second or so. I felt nicely warm for a minute or so, which was good because the CAT room was freezing. I did not have metallic taste, though.

Tuesday, I met with the gastroenterologist to plan my colonoscopy. He examined me and mentioned in passing that I have an umbilical hernia. I said it was news to me. He pointed out to me that sometime over the last few months my innie had learned to turn into an outie if I clench my abdominal muscles. I asked if this needed to be fixed before the hysterectomy. He laughed and told me that I won’t even have a belly button after the hysterectomy.

So, I am losing my uterus, ovaries, cervix, and navel.

Today, I went to the New York Blood Center to donate a pint of blood to myself. I do that again on Monday.

This will be the pattern for my life for the next couple of weeks. I am starting to look forward to the weeks of recuperation from the surgery. I can use the rest.

Tuesday, March 21, 2006

The Light at the End of the Tunnel . . .

So, when we last left our heroine (me), she had come through dealing with an autoimmune inflammation behind her eye. Radiation treatment had worked wonderfully and she no longer saw double or had an eye that looked like a bequest from Marty Feldman. The only side effect had been the loss of some hair behind her right ear.

Life was good. A pretty trying year for me had come to an end. February 27 marked the anniversary of the death of my Bernie. To my mind, things could only get better. I could see the light at the end of the tunnel.

And the light at the end of the tunnel was an oncoming train. I found out I have endometrial cancer.

(Time out here with a special note to my friends and family--I do not want anyone going nuts about this on me, OK? This is quite treatable and I will keep everyone informed of what will be happening. That is the purpose of this blog. I intend to stay reasonably upbeat during what I consider to be an interesting adventure. Any use of the word “ordeal” will be met with serious consequences. Anyone who cannot keep calm about this (at least around me) will be dope slapped. Are we all clear?)

(Second time out for short anatomy lesson: The endometrium is the lining of the uterus. The uterus is often described as pear-shaped, although I have never seen a pear with fallopian tubes. But if you can imagine an upside-down pear in your lower abdomen, the endometrium would be the—yeesh, this analogy is falling apart. Go Google on endometrial cancer for yourself.)

As I had mentioned earlier in this blog (See “More of the Same,” in December), I was spotting pretty frequently and having some mild menstrual cramping pretty regularly, or irregularly, depending on how you look at it. I am perimenopausal and thought this was to be expected. I thought that, after 42 years of unstinting service, my uterus and ovaries were finally closing up shop. I put it off having my regular GYN checkup, taking the attitude that I wanted to concentrate on one body part at a time.

Once the eye problem was a speck in my rearview mirror, I made an appointment in January with my nurse-midwife, Linda Stocker, CNM, who has seen me for a few years. I told her about the spotting and cramping. She did not think it was worrisome, but sent me to have a transvaginal ultrasound exam.

A transvaginal ultrasound is almost as much fun as, umm, OK, maybe it isn’t that much fun. Basically, it is an ultrasound diagnostic study where the ultrasound wand is placed in the vagina. You are up on a table, just like in a gynecology office, and you get told to scooch your butt to the end of the table, again, just like in the gynecologist’s office. And then, the technician politely hands you what looks almost precisely like a dildo. (Not that an innocent thing such as myself would know.) It even has a rather large condom already on it. You get to insert the wand and the technician sits there and checks out your uterus, ovaries, and a few other nearby parts. Considering the amount that you are paying for this test, they ought to make that wand vibrate.

Two weeks later, I was told that the lining of my endometrium was thickened, which sometimes happens in menopause. The next step was to have an endometrial biopsy taken. Linda told me that this would be slightly worse than a Pap smear, which to me always felt like a light pinch.

Slightly worse than a Pap smear. Ooof!! At one point, I thought they were going to need a spatula to scrape me off the ceiling. I thought Linda was pulling my uterus out using a bear trap and a rusty saw blade.

After I pried my hands off the sides of the exam table, Linda told me the sample looked normal and that this was probably a case of the endometrium building up and not being shed properly.

Hah!!

When I called Linda’s office to get the biopsy results, after a couple of minutes, an office nurse came on the phone and told me I had to come in to see the gynecologist the next day.

I asked what was wrong.

Nurse said, “Nothing is wrong. The doctor will speak to you tomorrow.”

I got off the phone and then called back. I pointed out that normal results are sent out on a post card, medium-bad results are reported by the nurse-midwife, and, therefore, any information that requires delivery by the gynecologist is not good news. I wanted the results of the biopsy and I wanted them now. I asked Linda to come to the phone.

Linda’s first words were that she knew I would not buy being told, “Everything was fine, but come in to see the gynecologist.” I told her that I was not going to throw a fit, but that I wanted to know what the results were, umm, NOW. Linda understood and told me that the biopsy showed endometrial adenocarcinoma, well-differentiated. She said it was a common type of uterine cancer and that a total hysterectomy would most likely take care of everything. I spent the next hour or so looking up endometrial cancer.

The next day, I went to meet with the gynecologist, who shall remain nameless. After a couple of minutes in the waiting room, where I seemed to be surrounded by young mothers with newborns, I was escorted into the gynecologist’s office and told that she would be with me in a minute or so.

I stared at the dozens of photos of her and her children and a few knickknacks until I decided to check out her bookshelf. I spotted a book on pathology of the female reproductive tract and settled in for some light reading about endometrial adenocarcinoma.

By the time the gynecologist breezed in 20 minutes later, I’d read about five pages. She sat down at her desk and picked up one of the files on it.

“Your biopsy was normal,” she said, which so stunned me that I didn’t hear anything else she said for a few minutes. I asked her to repeat that. Again, she told me my biopsy is normal.

“But Linda told me yesterday that my biopsy showed endometrial adenocarcinoma,” I said.

She looked at me blankly for a second and then looked at her desk. “Oh, you’re Valerie!” she said as she picked up the other folder on her desk. The diagnosis for me was endometrial cancer.

The gynecologist then gave me a rundown about endometrial cancer, all of which I already knew from having read it on the internet and in her pathology book. I needed a total hysterectomy and she stressed that it should be performed by a gynecologic oncologist, someone who was familiar with the best techniques for both the hysterectomy and for taking lymph nodes around the uterus to look for any spread of the cancer. She recommended a surgeon at Albert Einstein and said he was excellent. Oh, and the biopsy slides were on their way to a second reading at Massachusetts General Hospital.

I left her office with the surgeon’s phone number and called from the car. The earliest appointment that I could get was April 11. As if I was going to wait that long. When I got home, I called a good friend, Dr. Judy Chervenak, who is an obstetrician/gynecologist/lawyer in Manhattan and asked her who the best gynecologic oncologist was. She highly recommended Dr. Thomas Caputo, who is vice chair at Weil Cornell and is on staff at New York Presbyterian. Judy’s husband, Dr. Frank Chervenak, is head of OBGYN at Weil Cornell, which was another point in favor of going there.

(When I told Judy the lawyer/doctor the story of the gynecologist reading out of the wrong file, her response was “And they wonder why they get sued for malpractice.”)

It turns out that all the gynecologic oncologists were booked up because all the best ones were going to some national meeting. Dr. Caputo probably couldn’t see me until the end of March. I called Judy again and she may have pulled some strings because I got in to see Dr. Caputo on March 15.

Dr. Caputo is an older man, very calm, almost serene. His office walls were lined with covers of New York Magazines, since he had been named the top gynecologic oncologist in the city several times in a row. I sat down in front of his desk and pulled out a notepad and asked if taking notes bothered him. It didn’t, but I got the idea that not much bothers him.

He went over the diagnosis and told me what I already knew. I needed a total hysterectomy. I asked him if my ovaries could be saved. From what he said, I gather that I can save them in a jar of alcohol, but cannot keep them any other way. There is no good reason to keep them for a woman my age and many good reasons to get rid of them, according to him, Judy, the gynecologist, the nurse-midwife, and everyone and everything else I consulted. I was seriously put out about this. I like my ovaries.

Dr. Caputo has asked to see the biopsy slides, but noted that endometrial adenocarcinoma, well differentiated, means that it is quite likely that a total hysterectomy will take care of everything. The stage of the cancer will not be known until the hysterectomy, but I a worst-case scenario, I will need chemotherapy or radiation therapy.

He then laid it on the line. If he was to do the surgery, I would have to undergo some CAT scans, have a colonoscopy done (because I had never had one done), bank some of my blood, and be cleared for the surgery by a cardiologist of his choosing. Yes, sir!

So, at this point in time, I have had the CAT scans done and made appointments for the colonoscopy and cardiology sessions. I have also made an appointment for the presurgical testing at New York Presbyterian.

My surgery is scheduled for April 11.

I shall keep you abreast, or a-uterus, of what happens.