I've waited a couple of days before writing about my trip to Fox Chase...hoping I'd process the trip and determine what the heck I was gonna do! But, nope.... I'm more confused than ever.

I have to say that I wasn't very impressed with Fox Chase. I like to give the benefit of the doubt and believe that I was there on a bad day....but I'm really not so sure that's the case.

My appointment was for 11 am on Friday. I was to arrive for 10 am for registration.

Registration took three minutes. I'm sure the reason they schedule registration so early is that when travelling a distance and especially at that time of day, just about anything can happen and its easy to get caught up in traffic for an extra hour. We didn't. We arrived at 10 am.

My friend, Devon, went with me. I'm not sure how she manages to sit calmly through these kinds of things...but my guess is that she's had a lot of practice during her lifetime doing it with family members and is quite experienced at sitting in waiting rooms. I don't think she has a clue how much I appreciate her willingness to do this kind of stuff with me.

So, we register and move to the waiting room area. Its probably 10:30ish at this point. I expect to wait for a while.

Around 11 am, the people sitting across from us, get up and go to the reception area and complain that they had a 9:20 appointment and are still waiting. The receptionist explains that the doctor is backed up and has people waiting in five different examining rooms. She says she will try to get them in as soon as possible.

With this, I go to the reception area, tell the receptionist that I overheard their conversation and ask if we should go have lunch and then return. She says yes.

So, off we go to get our lunch. When we return, the people with the 9:20 appointment are still waiting. Also waiting is a delivery boy with a couple of pizza boxes.

Suddenly, I hear the delivery boy say that he can't wait any longer and he must leave. We watch him turn around and go out the door carrying the food. He gets into his car and he is gone.

A few minutes later the 9:20 appointment is called.

Soon afterwards I heard the 10:00 appointment people begin to complain about their wait.

At this point, I figured the wait was going to be a long one and so, I curled up in my chair near the fireplace and went to sleep. My friend graded papers.

I did wake up once when I heard the third group of people complaining about waiting for their appointment.

I guess it was probably 1:30ish when I woke to my name being called. I was a bit disoriented when I initially woke up but not at all stressed about the wait.

I was taken to an examining room by a nurse who handed me a gown and left the room saying that either the doctor or her nurse, Debbie, would soon be in to see me.

The examining room was cold and it looked like what I might imagine an examining room in a very busy big city hospital might look. And it was dirty. There was dirt on the floor and the baseboards and corners were filthy. It felt very unkempt and too big-city-ish for me.

So, I attempted to change into the gown only to find that no matter how hard I tried I couldn't wrap the thing around me...it was just tooooo small.

I did the best I could and got myself up onto the table to await the doctor or nurse.

In comes Debbie, the nurse. She says to me, "Oh my God...let me get you some clothes." Out she goes to find a gown. She returns and says..."please don't take offense to this, but its all I could find...we could both fit into this one."

I put it on and felt grateful that I could at least cover my body. :)

Debbie took some history. Why was I there and what was the story with my GI problems. I explained that I have some problems with diarrehea and constipation and she asked if I've had a colonoscopy. I told her no, that I couldn't seem to get anyone to schedule one for me. I explained that I've asked both my family doctor who has added it to a list of things to do and my oncologist who says she will schedule the appointment but never seems to do so. Debbie told me that I MUST have a colonoscopy.

She took my blood pressure and it is quite high. She seemed to overlook it and remarked that its right where hers would be (I'm sure she was referring to the wait I'd had in the waiting room). But remember, I'd been sleeping...I wasn't stressed at the moment. In actuality, the medication I'm on is responsible for the spike in my blood pressure. Since I've started on the Arimidex, my blood pressure has been averaging about 165 over 100. No one seems to care about that though, but me. :(

Then Debbie explained to me that some people see the doctor there and have reports sent back to their own doctors, others seem to prefer to trek to Philly for appointments, and still others see their own doctors but return annually to see the doctor in Philly. She asked me what I would prefer. I wasn't sure. And I told her that.

My thinking: I don't want my present doctor to know that I don't trust her judgement and went over her head if I am going to remain under her care...however, if I'm told something significantly different than I've been told by my doctor, then I may not care that she finds out I've gone over her head...and maybe, if I hear something so different that I doubt her competency at all...I might be willing to travel to Philly on a regular basis.

Okay, all that said...I told her I didn't know yet.

So, next, in comes the doctor. She apologized for the wait. I told her that I understood that she was busy and she responded by saying, "Bless You." She then asked me if I wanted her to treat me or to send her report back to my doctor. I responded by telling her that it depended on what she was going to tell me.

I could see that Dr. Swaby was very stressed, preoccupied and hurried. I'm sure she had a heck of a day. I could tell that she was trying to focus on me and listen to me but her mind was in a million places. It was easy for me to see this, because I'm a counselor and as such, I need to listen to students, but sometimes during a particularly bad day, I feel the same way this doctor obviously was feeling ...unable to focus on what is being said at the moment. And I sometimes respond in the same manner that Dr. Swaby was responding to me. Looking at me, starring at me, but not hearing me. Just too much going on in her head.

That being said. The next thing she said to me was "Well, this is simple. We are just going to change your medication." I said, "Can we do that?" She said, "Of course." I said, "Then why hasn't my doctor done that?" She said, "I don't know."

She wrote me a prescription. I asked her if this would take care of all of the side effects. She responded that it might. I asked her about the night sweats that keep me from sleeping at night and she said that nothing was going to make that go away...but that I could take neurontin which might help...but it would also make me drowsy. She wrote me a prescription for neurontin.

Then she asked me if I was having a problem with my knees and joints. And I told her I was. She said that is often a side effect of Armidex and that it has not yet been determined whether its a temporary or long term deteroriation. She said that I might find the joint and bone pain was not as bad with Aromasin.

She then told me that if Aromasin doesn't work, there was still another drug to try and that there was still tamoxifen.

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I'm cutting and pasting the following directly from the Fox Chase site: Arimidex is approved for women with early-stage disease right after surgery. Aromasin is approved for women with early-stage disease who have completed 2-3 years of tamoxifen. Femara is approved for women with early-stage disease right after surgery, as well as for women with early-stage disease who have completed 5 years of tamoxifen.

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Oh, and she told me that I should stop taking the Arimidex, give myself a break for a few weeks and then begin on the Aromasin. She said she felt quite confident in saying that my breast cancer would not return in two weeks time.

Dr. Swaby then asked me "What's this about you can't get a colonoscopy scheduled?" She said, "Just tell your doctor you want one. You are over 50 and you've had breast cancer. Tell your doctor you want it. Or just schedule one yourself...with your insurance, you can do that. You don't need a referral."

So, that's it. She told me that when I return in six months she would see me as a well baby visit, which is very early on a Monday morning but it meant not having to wait behind treatment patients.

Then she left. I got dressed and began to leave the examining room. I walked past Debbie who stopped me and said...wait, take your films with you. While she was getting them, Dr. Swaby came by and asked if I wanted her to schedule me for a colonoscopy. I told her yes. She wrote a note on my form and left. I went on my way.

Next, I meander through the maze of halls to the scheduling area. No one was waiting and one one was sitting in any of the six scheduling cubicles...it appeared that the women working there were tending to their personal business. So I waited.

After a little while, a woman called me to cubicle one. It became quite evident as soon as I sat down that she was new to her job and didn't have a clue what to do.

I don't have a problem with that at all. What I do have a problem with is her pretending that she knows what she is doing while she asks the woman in the next cubicle what to do every step of the way. And making mistakes all along the way.

First she wasn't sure how to schedule, then when to schedule, then the time of day to make the appointment. Then she didn't know if she could schedule for the GI stuff at this booth. When she found she could, she didn't know the phone number. She wasn't sure who she was asking for. She didn't know how to go about creating the appointment. At this point...I just wanted out of this place.

I let her make the appointments, correcting her as she went along. Yes, my appt should be on a Monday morning. Yes, it should be scheduled as a well visit. Yes, it should be in six months. Yes, you can schedule the GI appointment, I don't need to do it from home. Yes, you can schedule a consult and the procedure also. It was a nightmare.

I just wanted to go home.

Okay...here's what's going on in my mind. I remember way back when I asked my surgeon to schedule me with a really good medical oncologist and he promised he would. I remember back a while ago when I went to see him after seeing the medical oncologist and he welcomed me into his office by congratulating me and saying that this was the first time he had EVER sent a patient to Lisa Thomas that she did not mandate traditional chemotherapy.

This information coupled with what I've read about the aromotose inhibitors tells me clearly that my current oncologist is a conservative doctor and that she errs on the side of excessive treatment. I'm not so sure that's what I'm going to get at Fox Chase.

Another thing to think about is that locally I see my doctor every 3 months and she does blood work to check my tumor markers at each appointment. At Fox Chase, they did no blood work and I won't be returning there for six months... Who will do the blood work and check the tumor markers?

My current doctor is not very good about scheduling other appointments for me. I had to call and ask the nurse to make my last mammogram appointment because for the past two appointments, Dr. Thomas has been saying she was going to send me and hasn't. She also is supposed to be scheduling the colonoscopy which has not yet materialized.

So, I am confused.

Saturday, I decided to NOT take the Arimidex. I was going to do as suggested at Fox Chase and clean out my system and then begin the Aromasin.

I wanted to give the new medication a try to see if I would feel better on it.

Today, I took the Arimidex because maybe I like having a doctor close to home and one that I think tends to be more conservative.

Maybe she's right when she says I just need to learn to deal with the side effects.

I guess its a small price to pay to remain cancer free and alive.

Isn't it?

Oh, and then there's the blood pressure thing. My blood pressure when properly treated is about 100 over 65. Since I've been on the Arimidex its been consistently high. My family doctor increased the dosage on one of the two medications that I take hoping it would help some.

He ripped up the prescription his nurse wrote and re-wrote me a new one at a higher dosage. I sent it away with the prescription for the other blood pressure medication I take. (I am on so many meds at this point, that it makes more sense financially to send my prescriptions away for three month at a time refills then to fill them monthly).

Yesterday, I received a letter in the mail from the express scripts (the prescription place) saying that the two drugs I am having filled are the same drug. One is the generic name and one is the trade name.

Therefore, that means that my family doctor ripped up the wrong script and gave me the script for the 180 mg and 240 mg of the same drug. Just another frustrating example of how incompetent doctors can be sometimes. I always used to blindly place my trust in them. I've learned not to do so anymore.

Another note: My friend just fell on the ice and broke her shoulder and is in pain. She takes tamoxifen. A side effect of all of these drugs is loss of bone mass and osteoporosis. I hate hearing this about her. I hate that she has to be in this pain and I hate that this is a side effect and I hate that at some point in the next few years, it will probably be me with one of these broken bones.

Sometimes all this stuff sucks big time.