More About Hair

Today, I had a trim. An honest to goodness, cut off hair trim!

None of the hair on my head is even a half an inch long, but the hair around my ears and along the back of my neck looked scraggley. If I am going to have really, really short hair, I want it to look like I mean it. It really is all about the attitude, after all.

While waiting for my haircut, I chatted with some of the women who work in the shop. They all remember the day we shaved my head, and it helps them when I talk about my diagnosis and treatment. I mentioned Cory [my wig,] and the woman beside me who was waiting for her cut laughed and then she started to talk. Her husband had 15 years of bad health before dieing, and when she retired she made sure that she signed up for the company sponsored health insurance.

Then she began to talk about her niece. Her niece was diagnosed with breast cancer at the age of 27. Her father, a doctor, insisted that she have all the treatments available. This niece is a 25 year survivor!!!!! How wonderful to hear these stories.

The Beat Goes On

The show at the kid's college was wonderfully produced and performed. I just didn't 'get' it. This was the most baffling play I have ever attended, but I enjoyed every minute of it. Our trip was fairly uneventful [which is good.] We met up with my parents, had dinner, enjoyed the show and then met Lauren at the student union for an after-show beverage. The next day, we returned after my parents headed home, and took Lauren out to lunch, then to a super market for a plain yogurt run, before dropping her back at the dorm and heading home. Since Friday, she has had four additional performances. I suspect that by the end of today's matinee she will be one very tired actor.

The insomnia is getting worse. I lie in bed each night watching the clock sweep past 1am, 2am, 3am before falling asleep. It would be okay if I was fully rested at 8am, but I am not. I still need a full night's rest. I worry as I lie there. I worry about money and how expensive this house is turning out to be. We have run through our savings during this breast cancer battle. Though we have retained enough money for this trip, upon our return, it is going to be tight. I worry that clients will have disasters while I am away. I worry that this week's client installs won't go well. I worry that news of my illness will continue to reduce the number of violin calls I get, and new database projects.

[And, may I say, bone pain really SUCKS! It has stabilized somewhat, though occasionally it moves into my hands. If that becomes the norm, this would be totally unacceptable.]

But on the positive side, the work I am doing with the physical therapists is paying off. I am regaining my strength and flexibility. I can open jars again, and reach into the pantry for items without flinching. My upper back is opening up, and I am walking more erect. I have two more sessions before heading to France.

This week includes the two physical therapist sessions, two database install and staff training session, one gig, and more client drips n' drabs. Let's hope that I can sleep!

Details....

Today's post is not going to be in story form. There are no stories right now, just lots of small details that when taken together create a life.

This past weekend I was a substitute in a regional orchestra. Since they called at the last moment, I scrambled to get back into playing shape and to learn all the notes. Well, my body did alright not becoming sore until about hour 9 of the rehearsals. What was harder was the mental stuff; keeping my concentration for extended periods of time. I have put this on my list of things to work on. During treatment, the drugs and chaos inside my head have deteriorated the length of time that I can think about just one thing.

I went to a physical therapy appointment last week, and Kevin was able to identify places in my body that need help quickly. I have a series of four exercises that I should do each day. Though I haven't been perfect about doing them multiple times daily, the work I have done seems to be helping. The sessions are paid out-of-pocket until I hit $500, but I have decided that getting my body back is worth the money and have scheduled more sessions.

Thursday afternoon Leslie and I are going to see Lauren in her play at college. We will meet my parents at the hotel, before heading to dinner and the show. After the performance, we will have a little time with Lauren in the student union before we head back to the hotel. In the morning, Leslie and I will have breakfast with a friend who lives nearby before heading over to the college to take Lauren out to lunch after her morning classes.

The aromasin and I have a fairly uneasy relationship with each other. The bone pain and aches are a constant reminder that I am still in a battle. The headaches are becoming more frequent. Right now the headaches are a low-level, dull pain. Another reason to pop more pills. So many pills every day. The insomnia is very annoying. Lying in bed, wide awake or even lightly dozing, is just not fair! And in the past few days, the 'radiation' fatigue has returned. My days are filled with finishing files, and doing other follow-up database work. Lots of small jobs that need to be done before we leave on our trip.

The trip is almost upon us. And I am so looking forward to getting on that plane!

Violin

I am a violinist. Being a musician is at the core of who I am.

For sixteen years, starting at age 22, my sole source of income was performing, primarily as a member of a chamber music ensemble. This changed when Lauren started kindergarten, a move that required her to wake up in the same bed every morning. There were some other factors, but as the executive director of a music school for the following 10 years, I was able to continue playing professionally. Technically, music schools are supposed to actually value performance. [Reality was a little less pretty though!]

As I built a database company into a viable income stream, I continued playing, but with the demise of my string quartet, it became playing for money more than for love. The database work was clearly more important for our economic health.

While I was in active treatment, when I had energy, it went to serving the database clients. One, they needed me the best, they paid the best, and I could work when I felt capable, not when a conductor calls a rehearsal.

But that is about to change. A regional orchestra called today and they need a last minute sub. Tonight, the violin comes out. I wonder what it will feel like? My nails have almost finished their growing out, and I shouldn't catch edges under the strings. Tonight scales, tomorrow Tannhauser. [Any violinists who read this know how funny that is!]

It is time.

Aromasin

I am participating in a Phase III study comparing two aromatese inhibitors; Aromasin vs. Armidex. I took my first pill on December 15, 2005. Regardless of this study, my medical oncologist would have prescribed either one of these two drugs or Femara. The goal is to shut down estrogen in my body since my tumor used estrogen as food. I have already reported some of my side effects to the overseeing body, but am choosing to stay on the drug.

For those of you who ask how I am, here are side effects as listed in the protocol. I have noted the effects that I am currently experiencing with a [Y]:

Risks and Side Effects Related to EXEMESTANE [Aromasin]

Very Likely (> 20% of patients):
fatigue

Less Likely (5-20% of patients):

gastrointestinal side effects

• abdominal pain
• Loss of appetite
• Constipation
• Nausea and vomiting

General Effects

• Increased sweating
• Hot Flashes [Y]
• Flu-Like symptoms such as fatigue, fever, headaches [Y] or pain in the joints

High blood pressure (hypertension)

Nervous Effects

• Depression
• Insomnia [Y]
• Anxiety
• Dizziness
• Headache [Y]

Respitory Effects

• Loss of breath
• coughing [Y]

Rarely (1-4% of patients):

Blood clot in leg (deep vein thrombosis)

Diarrhea

Increased appetite

Thromboembolism (blood clot in the lungs)

Other rare side effects include: bone, joint or back pain [YYYYYYY!!!!!!!!!!], itching [Y], hair loss, rash swelling, runny nose, heartburn, tendency towards urinary tract infection, tendency towards upper respiratory tract infection, sore throat, sinusitis, confusion, increase of liver enzymes in the blood.

Although unlikely, unforeseeable or unexpected risk(s) may be involved. Exemestane will decrease your body's estrogen levels. The effect of this lowering of estrogen may increase your changes of osteoporosis, which may lead to fractures or increase certain blood lipids (which may increase your chances of having heart or circulation problems.)

The lowering of estrogen by an aromatase inhibitor could also affect your ability to think clearly. Research is ongoing in humans and these risks will be closely monitored.

Planning a Trip

Over the past few weeks our trip to France has begun to take shape. As I finalize plans, I am getting more and more excited. It almost feels real!

We land in Paris and will head directly to Anne and Henri's apartment in the 17th arr, joining them for breakfast. Anne and Henri will be heading out on a ski vacation, and have insisted that we use their apartment while we are in Paris. While in Paris, we will see Thomas and his new wife, and Charlotte and her ever-growing family. I received an email yesterday that Julien-Pierre, who I have not seen in many years, will be making a special trip just to see us during our visit. My other favorite cousin, Elizabeth, has had to move to Luxembourg, so we will not see them. [I am thinking there is another trip in our future perhaps!]

This is our fourth trip to Paris together [though it is my sixth.] We are open to any 'off the beaten path' suggestions. We have been to all the Michelin three star spots, and most of the two. We have also been to some spots that only I would love. Leave a message: "If I were in Paris for nine days, I would make sure I went to _________________________ ."

Nine days later we will take the TGV [fast train] down to Toulouse where we will spend two nights in a hotel. Now it is Saturday and it is time to head to our gite, or rented house, in Olonzac where for a week we will explore the southern Languedoc region. Some nights we will eat out, but most days we will use the well-equipped kitchen to prepare foods we purchase at market.

We will head back to Paris via Dijon where we have rented a small apartment in the center of town for three nights. An early TGV will return us to the airport before our flight home.

How wonderful does all of this sound? Yea, that is what I think too.